Gen_1502_01-12_Layout 1 7/8/15 3:35 PM Page 1 Generations SPECIAL EXPANDED EDITION The Official Publication of the National Ataxia Foundation Volume 43, Number 2 Summer 2015 International Ataxia Awareness Day (IAAD) — Friday,September 25,2015 — Chances are that if you had stopped 100 people on the street anywhere in the world 20 years ago and asked the question, “What is ataxia?” not one would have had an answer. From that question, a new initiative was born ... Interna- tional Ataxia Awareness Day (IAAD). IAAD is an international effort from ataxia organizations around the world to dedicate September 25 as International Ataxia Awareness Day. The first IAAD occurred on September 25, 2000 and was the first time ataxia organizations throughout the world declared and recognized September 25 as IAAD. Through IAAD,
Inside This Issue • International Ataxia Awareness Day events and fundraisers are highlighted on pages 1-11 • Updated information about the 2016 Ataxia Annual Conference is on page 12 • Read a touching article about Children NAF Chapters, Support Groups, Ambassadors, with Ataxia on pages 24-25 and members have created ataxia awareness • More ‘Pearls of Wisdom’ can be found throughout the United States, better informing on page 25 tens of thousands of people about ataxia. • What’s happening near you? Find out on the Calendar of Events on pages 49-54 Continued on page 3 Gen_1502_01-12_Layout 1 7/8/15 3:35 PM Page 2
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Please direct correspondence to: Generations Staff: National Ataxia Foundation Julie Braun ...... Financial Director 2600 Fernbrook Lane, Suite 119 Sue Hagen ...... Patient Services Director Minneapolis, MN 55447-4752 Joan Jensen ... Outreach Coordinator & Generations Editor Phone: (763) 553-0020 Mike Parent ...... Executive Director FAX: (763) 553-0167 CFC Lori Shogren...... Special Projects Coordinator Internet: www.ataxia.org #10752 Design, Production and Printing ...... Leader Printing E-mail: [email protected] Generations is published by the National Ataxia Foundation, Inc., Minneapolis, MN. Copyright 2015 by the National Ataxia Foundation, Inc. All rights reserved. Please contact us for permission to reprint or post on the Internet any article from Generations.
Disclaimer The National Ataxia Foundation does not endorse products, therapies, services, or manufacturers. Those that are mentioned in Generations are included only for your information. The NAF assumes no liability whatsoever for the use or contents of any product or service mentioned in the newsletter.
Table of Contents Annual Ataxia Conference (AAC) Membership Topics 2016 AAC Announcement ...... 12 NAF Merchandise ...... 23 NAF’s Travel Grant Program Helpful Resources ...... 28-29 Needs Your Support ...... 14 John Mauro Named 2015 Myra Kraft Implications of Genetic Testing Community MVP Award Winner ...... 31 and Ataxia on Families ...... 17-21 Chapter and Support Group News...... 37-43 Articles NAF Directory of Chapters, Support Groups, Social Networks and Ambassadors...... 44-48 NAF Attends Largest Meeting of Neurologists... 22 Calendar of Events ...... 49-54 Children with Ataxia ...... 24-25 Memorials and In Your Honor ...... 55 Ataxia: Little Known Disorder Personal Stories & Poems Perplexes Doctors and Patients ...... 26-27 Improving Your Brain Health More ‘Pearls of Wisdom’ ...... 25 Through a Healthy, Balanced Diet ...... 30 Reproductive Options: My Story ...... 32-34 Live Audio Looping at the NAF Booth ...... 35 One Ataxian’s Experience with HBOT ...... 34 MetLife Profile ...... 36 Sometimes ...... 55 International Ataxia Awareness Day Research/Research Opportunities IAAD Overview ...... 1-6 Patients with SCA1, SCA2, SCA3, SCA6 Get Involved in IAAD Events and Planning ...... 6 and MSA-C Needed for MRI Study ...... 10 Walk n’ Roll for Ataxia ...... 7-8 CoRDS Registry ...... 27 Membership Topics Individuals with SCA 1, 2, 3, 6, 8 Needed ..... 28 Friedreich Ataxia Tissue Donation ...... 29 Recent Fundraisers ...... 9-11 Weill Cornell Medical College FRDA Study ..... 35 Macy’s ‘Shop for a Cause’ ...... 8 Genes in Inherited Neurologic Brain Health Fair ...... 11 Disorders Study ...... 40 From the Desk of the Executive Director ...... 13 Patients with Early Symptoms of DNA Structure in Health and Disease ...... 21 Friedreich Ataxia Needed for MRI Study ...... 48 Gen_1502_01-12_Layout 1 7/8/15 3:35 PM Page 3
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Creating Ataxia Awareness The goal of IAAD is for everyone to partici- pate in some activity to help create awareness about ataxia by sharing your story with one other person who has never heard of ataxia, educating others by speaking at a school or civic group, getting in touch with your local media, or wear- ing ataxia awareness apparel on IAAD. Many have contacted city, county, or state government officials to receive a proclamation recognizing September 25 as IAAD. Others start or partici- pate in an IAAD event, get involved or organize a Walk n’ Roll for Ataxia. International Ataxia Awareness Day has grown over the years, with more ideas and more people getting involved. It will be celebrated on Friday, September 25. To find out how you can get involved, please download the IAAD Kit on NAF’s web site, www.ataxia.org, on the IAAD page under the Events Section. On NAF’s web site you will also find all the IAAD events near you on the Events Calendar under the Events Section.
Awareness Tools To help you get the word out about ataxia, NAF offers a variety of tools to support your awareness efforts. Public Service Announcements (PSAs) are available on the foundation’s website – www.ataxia.org/events/international-ataxia-awareness-day.aspx – and on NAF’s YouTube Channel – https://www.youtube.com/user/NatlAtaxiaFound – for you to post and share or include with a press release.
2015 IAAD PSA What Is Ataxia? PSA Gen_1502_01-12_Layout 1 7/8/15 3:36 PM Page 4
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A presentation about ataxia can be found on NAF’s website to use during your talk about ataxia, to prepare for a talk you are giving about ataxia, or to share with others who may be inter- ested in learning more about ataxia.
NAF Ataxia Presentation
In the IAAD Kit you will find a sample Press Release to aid you in sharing your story with media outlets. A sample IAAD Procla- mation is also available to submit to state or local officials to de- clare September 25th as Interna- tional Ataxia Awareness Day in your city or state. There is also an IAAD poster in the IAAD Kit that you can print, copy, and distribute. Copies of these mate- rials can also be requested by contacting the NAF office.
Thumbnails are available on NAF’s Facebook page – www.facebook.com/ataxia foundation – for you to use to update your social media profile picture in recognition of IAAD.
Ataxia awareness items are available for purchase through NAF’s Store. Available awareness items include t-shirts, wristbands, magnets, and bags. To purchase ataxia awareness apparel or items, visit the NAF’s online store at http://tinyurl.com/nafstore. Gen_1502_01-12_Layout 1 7/8/15 3:36 PM Page 5
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International Reach September 20 Mike Cammer is entering the IAAD helps creates ataxia awareness, but “Tour de Shunk” for the second year in a row IAAD also creates a way to raise much needed to ride the entire 102 miles! funds. Funds raised through NAF Walk n’ Rolls https://naf.myetap.org/fundraiser/15GoOn3/ and other NAF IAAD events have helped sup- • AZ Shop Till You Drop Craft & Vendor port vital ataxia research studies not only here in Fair – October 3 from 9 a.m. to 12:30 p.m. at the United States, but also throughout the the Disability Empowerment Center, 5025 E. world. The International Ataxia Awareness Day Washington, Phoenix, AZ 85034. At this event impact is international. Without the involve- you will find Health & Wellness vendors, a ment of NAF Chapters, Support Groups, Chinese Auction, 50/50 Raffle, and Kids Games Ambassadors, and members, many of these and Prizes. Snacks and bottled water will be for important ataxia research studies would have sale. This is a FREE event. Donations accepted. gone unfunded. All proceeds benefit the National Ataxia Foun- IAAD Activities dation. For more information about attending or Currently Underway or Planned exhibiting, contact Angela Li at (847) 505-4325 or [email protected] or Mary Fuchs at • Missy’s PCT Ataxia Hike – Missy is (480) 212-6425 or [email protected]. hiking the Pacific Crest Trail to raise awareness • Tea Time for Ataxia – October 10 at the for ATAXIA & in Memory of Allen Prather. Aubrey Rose Tea Room, La Mesa, CA. Due https://naf.myetap.org/fundraiser/hike4ataxia/ to the overwhelming popularity of this tea, this • National Bike Challenge – Team NAF year you will again have a choice of sitting from – Hop on your bike or trike and join Team NAF 11:00 a.m. to 1:00 p.m. or 1:30 to 3:30 p.m. in The National Bike Challenge! Please help us fill the tea room at both sittings. https://nationalbikechallenge.org/team/6929 Ask your friends to join you, and plan now to • Team KR Endurance – is a virtual run attend. Cost is $35 per person. All proceeds event to support the important work of the benefit the National Ataxia Foundation. For NAF! Visit the event website to register for a more information contact Jane Jaffe at (619) 286- virtual 5K, 10K, or 13.1-mile run. Registration 9745 or [email protected]. is free. Participants that raise $30 or more receive • Boscov’s Friends Helping Friends – a complementary t-shirt. On October 20 Boscov’s Department Store will https://naf.myetap.org/fundraiser/15nafrun/about again be hosting the popular FRIENDS HELP- Event.do ING FRIENDS special shopping day. 25% • The Ataxia Hoedown at the Seton discount shopping passes are available for $5 to Corral – September 19 from 5-10 p.m. at use on this special shopping day. The $5 from Elizabeth Ann Seton Hall, Bear, DE. This event your shopping pass purchase entirely goes to is a Country Hoedown featuring Chuck Wagon benefit the National Ataxia Foundation. To Buffet, DJ & Line Dancing. In lieu of an Admit- purchase your shopping pass contact Mike tance fee or Gifts donations are requested in Cammer at (610) 996-5814 or michael.cammer62 support of NAF. We’re also having a Chinese @hotmail.com. Auction For more information contact Joe • Warriors4Awareness – Warriors4Aware- and Cathy DeCrescenzo at (302) 369-9287 or ness is the name for the team of race car drivers [email protected]. that have committed to race in support of the https://naf.myetap.org/fundraiser/15hoedown/ National Ataxia Foundation by donating and • Tour de Shunk – Go On 3! – On challenging their fans to match the donations. Gen_1502_01-12_Layout 1 7/8/15 3:36 PM Page 6
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The Warriors4Awareness are asking their fans to employees are allowed by their employer to wear match donations according to their finish, the jeans at work on that day with a donation to donations go to help fund research for a cure. NAF. Various restaurants are donating a per- https://naf.myetap.org/fundraiser/warriors4aware centage of sales to NAF during IAAD, group ness/ and family picnics, information tables, and many • World Spinners – #ataxiaspinchallenge was others bringing the word “ataxia” to local com- created to raise awareness of a non-curable non- munities throughout the country. treatable disease ... ataxia. On the event website Many of the IAAD Events and fundraisers are you can learn about “The Challenge,” register printed in the Calendar of Events listing located and/or start a team to share your story, and in the back of this issue of Generations (starting challenge others. on page 49). https://naf.myetap.org/fundraiser/15spinners/ For the most current event information, Other exciting IAAD events planned may details and links, please visit the NAF Events include “Jeans Day” where on September 25 Calendar at www.ataxia.org.
How Did You Participate in IAAD? Tell us how you recognized International Ataxia Awareness Day (IAAD) this year. Share a photo with us for a future issue of Generations. Please e-mail your story/photo to [email protected] or mail to the National Ataxia Foundation, Attn: Generations Editor, 2600 Fernbrook Lane, Suite 119, Minneapolis, MN 55447-4752. Thank You Thank for creating ataxia awareness on IAAD and throughout the year. v
International Ataxia Awareness Day (IAAD) Get Involved in IAAD Events and Planning — Friday, September 25, 2015 — “International Ataxia Awareness Day” (IAAD) is an international effort from ataxia organizations around the world to recognize September 25 as International Ataxia Awareness Day. IAAD has grown over the years, with new ideas being implemented and more people getting involved. To find out how you can get involved, please download the IAAD Kit on the National Ataxia Foundation’s website, www.ataxia.org, on the IAAD page under the Event Section. On the website you will also find all the IAAD events near you on the Event Calendar under the Event Section as they become available. Please let the Foundation know about your IAAD event by contacting Lori Shogren at [email protected] or (763) 553-0020. Gen_1502_01-12_Layout 1 7/8/15 3:36 PM Page 7
Summer 2015 Generations Page 7 Walk n’ Roll for Ataxia The ultimate finish line ... a cure for ataxia What is Walk n’ Roll for Ataxia? The Walk n’ Roll for Ataxia program is the National Ataxia Foundation’s largest national grass- roots fundraising event held in recognition of International Ataxia Awareness Day (IAAD). Walk n’ Roll, which began in 2007, is held in cities across the U.S. Walk n’ Roll for Ataxia has raised more than $1,200,000 thanks to the support and tireless commitment from walkers, rollers, runners, volunteers, donors, and sponsors. Why Walk or Roll? Thousands of families, friends, co-workers, neighbors, and communities come together each year to support NAF’s fight to improve the lives of people affected by ataxia and their families. How Can I Participate? For more information, or to start a Walk n’ Roll in your community, please contact Lori Shogren, NAF Special Projects Coordinator at (763) 553-0020 or [email protected]. 2015 Walk n’ Roll Events Walk for Dave Liverpool, NY – August 8 Contact: Marc Alessi – [email protected] https://naf.myetap.org/fundraiser/15walk4dave/ Concord Walk n’ Roll Concord, CA – September TBD Contact: Brian Petersen – [email protected] www.ataxia.org/walk/concord Northern CA Walk n’ Roll Lafayette, CA – September TBD Contact: Joanne Loveland – [email protected] www.ataxia.org/walk/lafayette Minnesota Walk, Stroll n’ Roll St. Louis Park, MN – September 12 Contact: Terry Sweeney – [email protected] www.ataxia.org/walk/minnesota New England Walk n’ Roll Auburn, MA – September 12 Contact: John Mauro – [email protected] www.ataxia.org/walk/auburn Denver Run, Walk n’ Roll Denver, CO – September 13 Contact: Charlotte DePew – [email protected] www.ataxia.org/walk/denver Continued on page 8 Gen_1502_01-12_Layout 1 7/8/15 3:36 PM Page 8
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Walk n’ Roll for Ataxia Continued from page 7
Atlanta Walk n’ Roll Duluth, GA – September 19 Contact: Greg Rooks – [email protected] www.ataxia.org/walk/atlanta OC/LA Walk n’ Roll Orange County, CA – September 26 Contact: Cindy DeMint – [email protected] www.ataxia.org/walk/ocla Utah Walk n’ Roll Salt Lake City, UT – September 26 Contact: Jenny Durrant – [email protected] www.ataxia.org/walk/utah Western PA Walk n’ Roll South Park, PA – September 26 Contact Donna Eiben – [email protected] www.ataxia.org/walk/wpa Michigan Walk n’ Roll For more information on Walk n’ Roll for Ataxia events Ann Arbor, MI – October 31 and locations, please visit Contact: Elizabeth Sullivan – [email protected] www.ataxia.org/events/walk_n_roll.aspx www.ataxia.org/walk/michigan v
Macy’s ‘Shop for a Cause’ Purchase a “Macy’s Shop for a Cause” dis- rugs, electrics/electronics. Exclusions apply. count card today for $5 and help the National Card holders are also eligible to register to win Ataxia Foundation. Your special discount card a $500 Macy’s gift card. gives you access to a special one-day-only sales Macy’s will not be reprinting the passes and all event at Macy’s stores nationwide on Saturday, current Shop for a Cause savings passes will be August 29. Just in time for "Back to School" honored. The 30% discount will be given at the shopping! For the first time, Macy’s will be register for any and all applicable merchandise. offering 30% off all-day on SELECT regular, sale To purchase your discount card today you can and clearance merchandise throughout the order online through NAF’s online store, by mail store to those customers with a Shop for a by sending a check made payable to the Na- Cause discount card. Specifically, the pass will tional Ataxia Foundation to 2600 Fernbrook be good for: Lane, Suite 119 Minneapolis, MN 55447 (write • 30% off all-day on SELECT regular, sale and “Macy’s Card” in the memo line). You may also clearance merchandise; call the NAF office at (763) 553-0020 to place • 25% off all-day on select designer apparel an order or for more information. All Macy's Card collections for him and her, Impulse, designer orders must be received by August 21. All pro- handbags, men’s shoes, Wacaol, Tumi, Wustoff, ceeds benefit the National Ataxia Foundation. Henkels, Kate Spade home & All Clad; and For more information, visit www.ataxia.org/ • 10% off all-day on furniture, mattresses, macyscard. Gen_1502_01-12_Layout 1 7/8/15 3:36 PM Page 9
Summer 2015 Generations Page 9 Recent Fundraisers
Raising money for the important work of the National Ataxia Foundation and awareness of ataxia takes on many forms. From sports tournaments and events to dress-up days to product sales, there are an amazing number of ways that clever, caring folks have gotten the job done. The following are just a few recent fundraisers. The NAF is truly grateful to all of you for your hard work.
KLM Chargers with Barry Washburn, coach since 1984 KML Soccer Tournament Virginia Middle School 80’s Dress-up Day Submitted by Barry Washburn was a hit! The Kettle Moraine Lutheran Chargers ’80s Dress-up Day (KML) of Jackson, WI played against the Submitted by Betsy Turnbull Winnebago Lutheran Academy (WLA), both The Virginia Middle School in Bristol, VA of the Flyway Conference of the WIAA, on recently held an ’80s Dress-up Day fundraiser May 15. and awareness event. KML won against WLA, a huge rival of Colton Walsh helped organize the event, KML in girls’ soccer, giving them a share of which raised over $650 in honor of his the conference title. This is the fourth year younger sister who was recently diagnosed the team has had an ataxia game in honor of with ataxia. Everyone had fun dressing-up their previous coach Barry Washburn. The and supporting a great cause. girls wore blue armbands to represent ataxia and a donation table was set-up by the Students and faculty paid a minimum of $1 bleachers where attendees could make a do- to dress up; students also donated through nation or purchase a baked goodie to benefit their PE classes to earn an extra game day the NAF. Everyone who attended received for the week. Each student who donated information about ataxia reprinted on the received an Ataxia Awareness bookmark. back of the roster using the pamplet provided The event was held on Friday, March 27 by the NAF. The event raised almost $300. and was tremendous fun. For more information please contact Barry Washburn at [email protected]. Thank you to all of you who have so graciously raised funds and awareness! Continued on page 10 Gen_1502_01-12_Layout 1 7/8/15 3:36 PM Page 10
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Juniper Hills Fundraiser Gunning’s Run for Ataxia 2015 A charity event was held at Juniper Hills Golf Course by the Juniper Hills Women’s Kurt Gunning was diagnosed with SCA in Golf League on June 16. The event raised 2004. Samantha Gunning, Kurt’s daughter, $2,500. participated in the Fargo Marathon to raise money and awareness for SCA in honor of her fa- Pampered Chef ther. Samantha com- Party Fundraiser pleted the full marathon, held at Friends of Ed Schwartz hosted a Pampered the FargoDome on Chef party in his honor and as a fundraiser May 9, while her for the National Ataxia Foundation (NAF). Kurt & Mykin family and friends The event was held April 11 at Trinity Gunning participated in the United Methodist Church in McMurray. 5K and half marathon events. The event The event raised over $700. raised almost $9,000. Because of the wide range of symptoms that may be experienced and the irregular pattern of occurrence, diagnosis is very difficult. It took Ed 20 years to achieve a O’s American Kitchen diagnosis. Ed is starting an aggressive pro- gram to share his experience hoping that he Fundraiser can help someone else with his symptomol- The O’s American Kitchen offered 20% ogy. Ed is a member of the Western PA off and all proceeds to be donated to the NAF Support Group which is seeking others in when you presented their flyer at the time of and around Pittsburgh who have ataxia or purchase during the hours of noon to 8 p.m. know someone who does. If you are inter- The fundraiser had about 50 guests attend on ested he may be reached at (724) 986-8088 April 12. The event raised almost $350 for or via e-mail at [email protected]. research. Gen_1502_01-12_Layout 1 7/8/15 3:36 PM Page 11
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Chuck and Duck Dodgeball Tourney Submitted by Andrew Haluska Charlton Heights Elementary School held their Sixth Annual Chuck and Duck Dodge- ball Tournament on April 24. Neddroy “DJ HeadBussa” Bent (fourth from The event contin- left) and friends at the Strike Out Ataxia event ues to get bigger and better each year and Strike Out Ataxia the students, staff Submitted by Neddroy Bent (DJ HeadBussa) and community look The Fourth Annual Strike Out Ataxia forward to the tour- Charity Bowling Event was held on May 3rd nament. at PinChasers in Tampa, FL. Neddroy Bent This year’s event Luke Haluska (left) (aka “DJ HeadBussa”) partnered with the raised almost $5,000 and Keller Casey National Ataxia Foundation to host the event in honor of Jacob prepare to do battle to bring awareness to ataxia and in honor of Van Buren, a past Charlton Heights student his mother. who has Friedreich ataxia. Brain Health Fair Submitted by Mike Cammer I had the pleasure of manning the National Ataxia Foundation table at the Brain Health Fair in Washington, D.C. on April 18, along with Carolyn Davis, Jenean McKay and Libby Labash. We had a steady flow of visitors to our table throughout the day despite the beautiful spring day outside. We had NAF logo crayons and “Ataxia is not a Foreign Cab” and brain coloring sheets for the kids (and adults too). I was especially impressed by one young man, Soren Christensen, who was able to name all 12 sections of the brain! I talked more with Soren Left to right: Carolyn Davis, Mike Cammer and and found out that he was the winner of the 2015 Jenean McKay National U.S. Brain Bee, quite impressive for a ataxians who stopped at the table for more infor- high school freshman. mation about ataxia. We also got to meet fellow NAF Facebook Next year’s Brain Health Fair will be held in friend Colleen Brooks Thomas, who was taking Vancouver, British Columbia, I encourage all of in the event, and a couple newly diagnosed you living in the northwest to go visit. v Gen_1502_01-12_Layout 1 7/8/15 3:36 PM Page 12
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Room Reservations-BeginssRemoRo snoitavres - NovemberoNsnigBe 4rebmev 4 Room reservationsrRoom eservations for all room typestypesroom at the Caribe Royale will be made available starting November 4..4 Please note all ADA rooms must be reserved through the NAF office starting ononstarting November 4 at noon CSTTCSnoon by contacting (763) 553-0020553(763) -553 0020 or [email protected]@ataxia.orgorg. Calls or e-mails-eor mails prior to noon CSnoon CSTT on November 4 to reserve an ADA room cannot be honored. Reservations at group rate will be availableavailable until February 27, 20162016.. The NAF group rate starts at only $1499$14only +tax for Standard Rooms..Rooms Meeting Registration-BeginseRgniteMe noitartsige - NovemberoNsnigBe 4rebmevo 4 Registration for the 20162016the NAF AACACANAF will open on November 4..4November You are encouraged to register before February 12, 2016201612, to receive the early registration discount rate. In addition, members of the NAF pay a lower registrationregistration fee to attend the AnnualAthe nnual Ataxia Conference.Conference. If you are not currently a member of the Foundation go online at www.atwww.ataxia.orgtaxia.org or call the NAF office at (763) 553-0020-553(763) 0020 to become a member or renew your membership. For the latest information on conference registration, program schedule,schedule,program and area information keep checking the HNAF'the NAF'sNAF's website www.ataxia.orgwww.ataxia.orgg.
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From the Desk of the Executive Director
There is much happening at the National information on this important drive will be Ataxia Foundation this summer. Plans are forthcoming. underway for the 2016 Annual Ataxia Confer- The NAF, in partnership with Sanford ence which will be held in Orlando, Florida on Research, is pleased to announce that a new and April 1- 3, 2016. The name of the meeting has improved CoRDS Ataxia Patient Registry has been changed from the Annual Membership been launched. The new system offers a variety Meeting to the Annual Ataxia Conference to of improved functionality for our partici- better reflect what the conference has evolved pants. All currently enrolled participants have into – a conference for the ataxia community. received an email from CoRDS with a link to Plans have also begun for the NAF’s Sixth the new portal and their new username and Ataxia Investigators Meeting password. (AIM) being held just prior to the For those who have not yet 2016 Annual Ataxia Conference. registered on the CoRDS Ataxia Leading ataxia scientists and Patient Registry, you can begin clinicians from around the world your enrollment by completing a will gather together to share their screening form. Once the form is cutting-edge ataxia research to submitted, you will receive an help accelerate worldwide ataxia e-mail from CoRDS with a link research efforts. to the login page. Once you login The NAF Annual Membership to the portal, you will be able to Drive continues, and we are truly complete the questionnaire to grateful to all who have become finish your enrollment. You can new members or have renewed find the link to the CoRDS their membership. A warm Ataxia Patient Registry on NAF’s welcome to our new members Michael Parent web site, www.ataxia.org or to go and for our renewing members, a heartfelt thank directly to CoRDS at https://cords connect.sanford you for your continued support! Membership research.org/BayaPES/sf/screeningForm?id=SFSFL#. support is vital in providing funding for impor- International Ataxia Awareness Day, Septem- tant programs for ataxia families. Thank you for ber 25, is just around the corner. Many events making a difference. This is still time to renew and activities are being planned in recognition of or become a member, just go to www.ataxia.org this very special day. Walk n’ Rolls for Ataxia and click on the “Donate Now” button. have been scheduled throughout the country for We are very excited by the interest from this Summer and early Fall to raise ataxia aware- researchers around the world in the NAF’s five ness and funds to support the important work of research funding programs for the funding cycle the National Ataxia Foundation. Thank you to which will occur in late December of this year. our amazing volunteers, event organizers, spon- Last year, the NAF received 107 ataxia research sors, donors, and participants. Don’t forget to tell proposals from 19 countries. Much of the funds a friend, neighbor, or co-worker about ataxia on to support the NAF’s research programs are International Ataxia Awareness Day and to wear through our generous donors who support the your ataxia apparel. NAF Annual Ataxia Research Drive. This year’s Thank you. v drive will begin on October 15th. Additional Gen_1502_13-22_Layout 1 7/8/15 11:16 AM Page 14
Page 14 Generations Summer 2015 NAF’s Travel Grant Program Needs Your Support
“Being around other people with ataxia at the meeting helps me feel less alone.” The National Ataxia Foundation’s Annual who are unable to financially attend the AAC, Ataxia Conference (AAC) connects the ataxia the NAF established an AAC Travel Grant Pro- community. The conference program is de- gram to help with some of the costs associated signed to foster learning and understanding with attending the AAC. by providing informative presentations You can help someone with ataxia about ataxia research and on living with attend the AAC by making a donation ataxia. Connecting with those who to the NAF AAC Travel Grant understand and face the same Program. Your gift to the AAC challenges is also an important Travel Grant Fund will make an component in which individuals immense difference in someone’s with ataxia, their family members, life. Thank you for your support and caregivers have the opportunity and for making the AAC experience to share and network. possible for an individual affected by Traveling to an Annual Ataxia Conference can ataxia who would not have been able to attend be financially difficult. To help those with ataxia without your help. Quotes from Past Travel Grant Recipients: “It gave me an opportunity to be part of the “Being around other people with ataxia at the NAF.” meeting helps me feel less alone. I know that “Thank you for providing me the opportunity even though they might have different symp- to attend this year’s AMM. I am grateful.” toms, they still understand what I face.” “Many, many heartfelt thanks to all who “Attending enables me to network and mingle donated so I was financially able to attend with ataxians from around the country. I feel my this meeting, where I fit in. Thank you so experience helps with issues that face us. I am much!” constantly looking for new information to help “It is one of the few times that being disabled is the ataxia community through support and normal & expected. Attending is so affirming – advocacy and to strengthen my relationship with good for my self-esteem.” NAF” v
Vehicle Donation The donation of your vehicle to the 1-800-240-0160 or visit www.donateacar.com. National Ataxia Foundation will help support the Your vehicle will be picked up at your home, important work that is being done on office or other place that you designate. Be sure behalf of all who are affected by ataxia. to have the certificate of title with the vehicle. To donate your car, truck or motor home, call Thank you for your support. Gen_1502_13-22_Layout 1 7/8/15 11:16 AM Page 15
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NAF Credit/Debit/EFT Authorization Form
Yes, I want to save time and money by joining NAF’s Recurring Gift Membership Program.
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Summer 2015 Generations Page 17 Implications of Genetic Testing and Ataxia on Families
Presented by Melissa Gibbons, MS, CGC, a genetic counselor at the Children’s Hospital in Denver at the 2015 National Ataxia Foundation Annual Membership meeting in Denver, CO. Melissa works with Dr. Abigail Collins, the Director of the Ataxia Clinic at the University of Colorado Hospital. Her presentation was edited for publication in Generations. Genetic Counselors Common Reasons to Genetic counselors are individuals who have a See a Genetic Counselor Master’s Degree specifically in genetic counsel- Common reasons that people typically see a ing. It’s a two-year, intensive program, with genetic counselor are because: clinic rotations on all subspecialties of genetics. • They have a family history of a certain health Course work is heavy on the sciences, but it’s condition and they want to know if they are also very focused on how to actu- at-risk for inheriting it. ally talk to individuals, interact • They are planning a preg- with people and how to share nancy or are pregnant. important information in a way • If they are symptomatic, they that people can understand. want to have an answer as to why Certified Genetic Counselors they’re having the symptoms are individuals who have gradu- they’re having. ated from an accredited program, • They want to learn about sat for the American Board of inheritance and whether they can Genetic Counseling certification pass this on to additional family exam and maintain education members. over time. This is very important • They are seeing us because because the field of genetics is their child is having some con- changing so rapidly. It’s not some- cerns, which is my most common Melissa Gibbons thing where you get a degree and situation as a pediatric genetic not keep up with emerging information because counselor. you’ll be so far behind within a week. The Right Test for the What we truly do is that we are educators. It’s Right Patient at the Right Time not our job to tell you what to do. It is our job to Our mantra is, “The right test, for the right give you all the information so that you can make patient, at the right time.” We are reminded to a well-informed choice that is right for you and slow down, think about why the family is your family. The term we use is that we are approaching us, and what is the best thing for that “non-directive.” Unlike medical professionals family. who tell you, “I think you should have this sur- There are different types of genetic testing: gery,” or “You need this blood test to look for Diagnostic testing is the most common and diabetes,” we give you all your options, help talk involves identifying current disease states. This is through it with you so that you can make your own choices. Continued on page 18 Gen_1502_13-22_Layout 1 7/8/15 11:16 AM Page 18
Page 18 Generations Summer 2015
Implications of Genetic Testing... below). Family planning and lifelong goals are on Continued from page 17 both; it would depend on your viewpoint as to whether the reason would be a pro or a con to the test where you are having signs or symptoms genetic testing. and you are testing to identify why. Some individuals may want to have the answer Carrier testing is for conditions that an indi- to the question: “Why?” Others may be think- vidual can pass on to future generations but may ing about family planning. In certain genetic not have symptoms. conditions a diagnosis can impact your disease Predictive testing is used when a person is management because there may be certain drugs at-risk for developing a genetic condition but or therapies that are more beneficial. Access to does not yet have symptoms. services is one reason often seen in the pediatric Prenatal testing is offered during pregnancy population. Having a name of the disease instead to identify if the fetus has a certain disease. of a summary of symptoms can actually improve access in schools and with healthcare services. Preimplantation genetic diagnosis is either The results may inform you of your ability to do a screening test depending on what you are doing things in the future so it may speed up your time- or a diagnostic test to determine if an embryo has line for doing some of the things you really want the disease before it is implanted. to do, like travel or retire. Newborn screening is a screen that is On the flip side, there are just as many reasons performed at birth for diseases that need quick why someone may choose not to get genetic test- intervention in order to help eliminate symptoms ing. A significant reason is that genetic testing, or help to manage symptoms better. Many and some of you may have experienced this, can people know this as the PKU test, although that actually raise more questions than answers. is only one of the diseases. Some people don’t Genetic test results are not always black and realize that this is done in all the states, unless you white; there is a lot of gray. Sometimes it can lead opt out. to more confusion. Many individuals are con- Why get Genetic Testing? cerned that a diagnosis may lead to discrimina- Everybody has a different reason for why they tion. They may feel that their control is taken might explore genetic testing and no two people away from them, because now their diagnosis is are going to have the same reason. You’ll also in control. One reason that I have heard from notice that some of reasons to have or not to have families is there is a certain amount of guilt genetic testing are listed on both slides (see slides associated with having a genetic change and 8 Gen_1502_13-22_Layout 1 7/8/15 11:16 AM Page 19
Summer 2015 Generations Page 19
passing it on, even though none of us have con- all those insurance steps with you and make sure trol over our genes and what they are doing in you do not end up having a really large, out-of- our bodies. pocket, cost. Some labs do offer patient protec- Discrimination tion services which can help cut down on the The Genetic Information Nondiscrimination cost as well, but you need to know which labs Act (GINA) was passed in 2008. It is a federal law offer those protections for the family. that protects people from genetic discrimination The biggest hurdle is the interpretation of the in health insurance and employment. This does results. Anyone can order a genetic test, but not not apply to things such as life insurance or long- everyone knows what those results mean. I have term care or disability. Basically it states that you had many families that have a result and were told can seek genetic testing or counseling without one thing or were just handed or mailed the results, and have not had any actual explanation. fear that there will be genetic discrimination on Genetic test results are not straight forward. They behalf of your insurance company. However, this require someone to look through the results, does not apply to everyone. It does not apply if look at what the genetic change is, and interpret you have “TriCare” which is the military insur- whether or not it is the cause of the change. We ance, if you have the Indian Health Service or if have had families who thought they had a you are a federal employee. There is a separate diagnosis for years and they came to see us and it law that provides the exact protection. You may turned out that someone had misread their still experience some discrimination based on report and they were given the wrong diagnosis. your symptoms under a health plan. They can’t That can be really important because different use the actual genetic diagnosis, but they can use diagnoses come with different therapies and a the medical concerns that you have. This means different prognosis which will cause a family to that by getting genetic testing you are not attack it very differently. increasing your risk of discrimination over what So you get through all these hurdles. Now was already there just by having symptoms. what? Genetic testing that confirms a diagnosis There have been some new laws put into place can often give us information that can guide recently that help protect people from pre- management, and more importantly provides existing conditions. risk information to families, and allows for There are some hurdles on the path to genetic connection to others who may have a similar testing. The first is finding a provider who can diagnosis through things like this annual meet- put it altogether and recommend the appropriate ing. However, it’s not always clear cut, and many genetic testing, not just some generalized test that times families are left with more questions. they don’t know how to interpret. Unfortu- Additionally, genetic testing doesn’t result in nately, once you have the provider in place, you what everybody wants when they come in which need to deal with the insurance company. is the crystal ball prognosis: “How does this Genetic testing is not something that is stan- impact me, specifically?” That’s the hard part dardly covered across all insurance plans. Each about genetics, because we don’t know all those plan is very different and some insurance plans answers. We may be able to find an underlying actually have exemption clauses where they do genetic change, but we still don’t have a great not cover genetic tests at all and unfortunately idea on how all of our genes work together, how right now, genetic testing is quite expensive environment or lifestyle changes play into that. ranging from a couple of hundred dollars all the So we can give some guidelines and general way up to several thousand dollars. You really have to work with someone who can go through Continued on page 20 Gen_1502_13-22_Layout 1 7/8/15 11:16 AM Page 20
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Implications of Genetic Testing... results because you’re having signs or symptoms. Continued from page 19 For a family member who is not symptomatic, their approach to testing is going to be very information but sometimes families do walk different because they are not trying to answer away feeling like they didn’t get many more an- the question, “Why am I having these symp- swers and that can be a very unsettling feeling for toms?” They are trying to answer the question them. of, “Whether I am going to get the symptoms or Once we do have the results, then it becomes if I could pass it on?” This decision may differ if a family affair. One thing I stress is: “Yes, your one already has children or are still in the family genetic tests belong to you, but in genetics, the planning process or thinking about expanding results are information that the whole family is the family. Other family members may already impacted by.” The biggest challenge that I come be having symptoms but are not ready to deal across in a family is how do they go about shar- with them yet so when you get your diagnosis, ing these genetic testing results? Much of it is then they may have the understanding, “Oh, based on family dynamics, how the family inter- wait, that’s probably why I’ve been having X, Y acts with each other, how members share things, and Z symptoms.” This may accelerate the and in some cases, how they don’t share things. acceptance process of their symptoms. Other Some families might not have open discussions individuals may not find themselves at-risk, with family members about what’s going on because they decide to have genetic testing, but from a health standpoint. It is something to put they may be at-risk for passing it on. Many of the a great deal of thought into. disorders that we talk about today are ones where I have families do it different ways. A favorite of the gene can expand over generations so they get mine was a family of a pediatric patient who their test results and find out that they are prob- hosted a party and invited all of their family and ably not going to have symptoms but now they friends who they wanted to know the results and need to think about how that affects their they told everyone all at one time. They made it children and future grandchildren. How you more like a celebration versus feeling like they interpret and accept the results really depends were sharing negative news with everybody. on where you are in your own lifecycle. Other individuals like to do it by letter or by one- The impact on family planning is a little differ- on-one conversations with family members. ent than it was years ago. We have technology One thing genetic counselors do is talk about now that sometimes sounds like science fiction. how to share the results with the family and how When we are talking about reproductive options, to anticipate the reactions that may come. I’ve the first thing we always talk about is that you mentioned family dynamics and one of the can choose to do absolutely nothing and that is an things we have to think about is that some okay decision. You approach it like you had family members may decide that they don’t want never known the genetic condition exists in your to hear this information. That can be really hard family. when you feel like they should have the infor- Some individuals may choose to use a donor. mation. So how do you go about navigating that That can be either a sperm or egg donor. That of telling some family members who want to child is then not related biologically to one of the know but then those family members that don’t parents but it decreases the chances of having the is: to let it be. same condition. A very hot topic right now is: The impact on family members is a little dif- preimplantation genetic diagnosis. This is when ferent than when you get your genetic testing a couple goes through invitro-fertilization 8 Gen_1502_13-22_Layout 1 7/8/15 11:16 AM Page 21
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which is a process where they stimulate mom while. They include: Chorionic Villus Sampling to create more eggs than she typically would, (CVS) which is taking a sample of the placenta retrieve those eggs, then match them with sperm early on because the placenta and the baby have to create embryos outside of the body. They can similar genetic information, or Amniocentesis then actually do genetic testing on the embryos which is taking a sampling of the fluid sur- and look to see if an embryo has the genetic rounding the baby later in pregnancy. Both of condition. Only the embryos that do not have these can be used as a diagnostic test. Another the genetic condition are implanted. This is the choice is adoption as an option for expanding a most expensive of all the options, and on average family. is $20,000 plus, depending on the center you are Each family is so different and there is no way using. Also it requires quite a bit on behalf of the to address every situation, however, there are mom. Right now, insurance companies are tend- some great resources about genetics and genetic ing to not cover this, although there are starting testing on the National Ataxia Foundation’s to be some exceptions (see story on page 32). website at this link: www.ataxia.org/links/ataxia- The other option is prenatal diagnosis. These biology.aspx. Thank you. are techniques that have been around for quite a v DNA Structure in Health and Disease (DSHD) FRDA Conference –AIIMS New Delhi – April 11-13, 2015 Submitted by Chandu Prasad George (SAMAG) FRDA Conference in India As an FRDA patient and Ataxia Patient Advo- Bidichandani, Scientific Director of the FARA- cacy Group Leader, the conference has thrown USA Scientific Advisory Board, and Dr. Barbara much light and better understanding of new Schreiber-Mojdehkar, Vienna, Austria, gave therapeutics and new research work being presentations on new research therapeutic mod- done in treating FRDA. More importantly the els of FRDA. This conference was partly funded conference gave a clear understanding of physio- by FARA-USA. therapy approaches, the use of balance vests to Lastly our special mention of thanks to Dr. treat some symptoms associated with FRDA. We Rajeswari Moganty, Organizing Secretary of the found this information valuable and very helpful DSHD 2015 Conference and Professor in the for all FRDA patients. Department of Biochemistry at All India Insti- Dr. Achal Srivastava, Professor Neurology tute of Medical Sciences, New Delhi who AIIMS, devoted every Saturday of his working successfully organized this meeting and also de- time to attend ataxia patients in his Ataxia Clinic. clared an annual FRDA meeting inviting inter- Dr. Agarwal elaborated on different approaches national researchers as well as FRDA patients. such as physiotherapy and assistive devices in For more informaton about SAMAG, e-mail improving the quality of life of ataxians. [email protected] or visit our website, International researchers like Dr. Sanjay www.ataxia.in. v Gen_1502_13-22_Layout 1 7/8/15 11:16 AM Page 22
Page 22 Generations Summer 2015 NAF Attends Largest Meeting of Neurologists
Submitted by Sue Hagen, NAF Patient Services Director In 2011, the American Academy of Neurology U.S. Brain Bee. He filled out all the parts of (AAN) began their annual meeting with the first the brain that were on the brain coloring sheet public outreach education event in AAN history. without looking at the answers on the back! “The Brain Health Fair” was created as an event We can only hope that he chooses to study ataxia to connect patients who have a brain disease and in the future. their family members with care givers, informa- Following the Brain Health Fair the next tion, experts in the field and resources. The week, the AAN Annual meeting began with the National Ataxia Foundation was at the first Brain Presidential Plenary Session. Dr. Stefan Pulst, a Health Fair and has had a presence at every fair member of the National Ataxia Foundation’s since. Medical Research Advisory Board, gave the George C. Cotzias Lecture titled, “Degenerative Ataxias: From Genes to Therapies.” In this lecture Dr. Pulst described his lab’s research in SCA2 to the neurologists who were in atten- dance. The 2015 AAN meeting broke records with well over 13,000 in attendance. Throughout the four days of the AAN meet- ing, the National Ataxia Foundation staffed a booth in the exhibit hall. Neurologists from around the world stopped at the booth to gather information about ataxia and information about NAF’s services and research programs for their Soren Christensen from Thomas Jefferson H.S. patients. Thank you to Diane Paige, Carolyn for Science and Technology, Alexandria, VA Davis and Mike Cammer for volunteering to and Mike Cammer staff the table at different times throughout the AAN meeting. This year the Brain Health Fair was on v Saturday, April 18 in Washington, D.C. Local volunteers staffed the exhibit table and provided information about ataxia to the attendees. New this year at the NAF exhibit table were boxes of Matching Gifts NAF-branded crayons with coloring sheets of Many employers will match your gift to the brain and NAF’s Foreign Cab. Thank you to the National Ataxia Foundation through a Mike Cammer, Jenean McKay and Carolyn Matching Gifts Program. Davis for distributing materials during the day This valuable benefit will allow you to have twice the impact on the lives of families af- and educating the public about ataxia. fected by ataxia when you make a donation Mike Cammer had the pleasure of meeting to NAF. Please give generously and encour- Soren Christensen at the Brain Health Fair. age your co-workers to do the same. Soren is a 9th grader who won the 2015 National Gen_1502_23-43_Layout 1 7/8/15 11:19 AM Page 23
Summer 2015 Generations Page 23 NAF Merchandise BOOKS IAAD T-Shirt Sizes S to XXXL $10 Past Annual Membership Meeting (AMM) T-Shirts Healing Wounded Doctor-Patient Relationships by Linda Hanner with contributions by John J. Witek, $1 each while supplies last! MD $10 NAF Polo Shirts $25 Living with Ataxia: An Information and Resource Mens – Royal blue w/white NAF logo S, M & XXXL Guide by Martha Nance, MD (2nd ed. 2003) $14 Light blue w/royal blue NAF logo in L to XXXL Managing Speech and Swallowing Problems: Womens – Light blue w/navy NAF logo in S to XXL A Guidebook for People with Ataxia NAF Denim Shirt w/white NAF logo $27.50 by G.N. Rangamani, PhD with contributions from “Ataxia is Not a Foreign Cab” T-Shirt $10 Douglas E. Fox, MS (2nd ed. updated 2006) $7.50 White sizes S to XXL Ten Years to Live by Henry J. Schut $8.75 “Ataxia is Not a Foreign Cab” Long-Sleeve T-Shirt Light blue sizes S to XXXL $15 There’s Nothing Wrong with Asking for a Little Help … and Other Myths “Ataxia is Not a Foreign Cab” Sweatshirt by Dave Lewis $15.95 White sizes S to XXXL $20 Recipes and Recollections NAF 50th Anniversary Coffee Mug $3 by Kathryn Hoefer Smith $10 “Ataxia is Not a Foreign Cab” Magnet $1 Cooking for a Cause Window Cling or Bumper Sticker $1 ea. or 6 for $5 by Julie Karjalahti for FRDA research $12 NAF Ataxia Awareness Band Blue Ballads of a FamilyVIDEO/CD Man CD $5 One size $2 ea. or 3 for $5 Together There is Understanding VHS $20 DVD $25 NAF Ataxia Awareness Ribbon Magnet $4 SHIRTS/MISCELLANEOUS Reusable Grocery Bag w/ NAF and Cab Logos $5 “Know Ataxia” Backpack 20”x16” $5 NAF Wheelchair/Walker Pouch 9.5”Wx5”Hx1”D $5 NAF Grip n’ Sip Water Mug $5 NAF Lapel Pin $5 Original NAF IAAD T-Shirt S & XXXL only $10 Magnetic Power Clip $3 NAF Baseball Cap (White or Blue) $10 NAF Shoulder Bag $10 To place your order, call (763) 553-0020, fax (763) 553-0167, mail a copy of this form to National Ataxia Foundation, 2600 Fernbrook Lane, Suite 119, Minneapolis, MN 55447 or visit http://tinyurl.com/nafstore ORDER FORM
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Page 24 Generations Summer 2015 Children with Ataxia
Most of the spinocerebellar ataxias and sporadic recall how the oxygen left my brain and the sick ataxias have an adult-onset of symptoms, how- feeling in my stomach on that painful day. A ever, there are forms of ataxia that affect young wonderful nurse had taken Ang for a walk in the and adolescent children. The National Ataxia hospital as we sat numb in the doctor’s office Foundation wants to share the stories of some of while being told the devastating news of our those children. daughter’s future. The doctor told us to be strong In 2011 NAF published a booklet that was in front of our children and cry at night when distributed at a medical conference of pediatric they were in bed. neurologists. The booklet provided “Faces of Angela was 15 years old when she diagnosed Childhood Ataxia” to the doctors and re- with SCA 17, today she is 23. She does not seem searchers in attendance. The booklet became that old though. The progression has caused her very popular for other venues to no longer be able to do most and audiences and was reprinted things. It’s almost as if her life in 2013. NAF recently updated stopped in its tracks. Angela the booklet and added new sto- cannot walk anymore, she is in a ries of children with ataxia. We wheelchair that we push because asked for stories of the challenges she is not able to operate it. that a child with ataxia and the Harness straps are necessary at parents or other family members all times. Ang cannot support struggle with daily. We received herself sitting or standing. A stories of the courage which headrest must always be in place with many children face this dis- otherwise her head falls back- ease. We also included stories in wards and she is not able to lift it memory of children who have up on her own. Choking occurs lost their battle with ataxia. We quickly. are grateful for the generous Angela Vomiting had become a very contributions from parents and serious problem for Angela. We tried for months family members to provide this booklet. Please to figure out why this was happening. We were contact the National Ataxia Foundation if you scared. Losing Angela certainly crossed our are interested in receiving copies of this booklet minds during this difficult time as she dropped for your fundraising or ataxia awareness-raising down to 69 pounds. We eliminated foods, added event. foods but nothing stopped the vomiting. We Below you will read the story of Angela, who decided to take Angela off all medications, is now 23 years old. Her story appeared in the the weaning process took quite some time but first edition when she was 19. eventually the vomiting completely stopped! She Angela’s Story now also sleeps through the night or is at least Story provided by Angela’s Mom and Dad peaceful. We have three children, all beautiful girls; Unfortunately a large pressure wound near her Angela is our middle daughter. Our world was tailbone opened up causing Angela great distress. turned upside down when Angela was diagnosed The wound became infected. We added an air with Spinocerebellar Ataxia type 17. I can still pressure mattress to her bed, a ROHO pad to 8 Gen_1502_23-43_Layout 1 7/8/15 11:19 AM Page 25
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her wheelchair, tissue nutrients to her diet and not able to do that and times when we are not Angela was repositioned every 30 minutes. It able to tell if it’s a yes or a no. Angela’s losing her took a little over a year for the pressure wound ability to talk has been one of the hardest things. to completely close up and heal. This was an Is she hungry? Is she in pain? Is she cold? Is she incredibly painful time for Angela and also for sad? Is she scared? We can only hope that she her family. knows that we are trying our very best to give It is necessary for us to feed Angela. Each meal her what we think she needs and wants. generally takes one and a half hours. The food Angela is now very stable, she is tough, she’s a needs to be chopped up very fine and have a high fighter. Better yet, she is happy and likes to be calorie count. Every morning her dad gives her near us. Her smile is as beautiful as ever! We yogurt, cereal with whole milk, Juven (which continue to wait for a cure for Spinocerebellar promotes tissue growth and strength), Karo Ataxia. We are so fortunate to have so many syrup and, of course, ice cream. Every single loving and dedicated doctors, nurses, counselors, morning without fail he does this. We need to researchers and all of the others who tirelessly be diligent in our efforts to feed her so she can at provide their time and talents to help make life least maintain her low weight which is now in better for others ... to find a cure. Please don’t the 80’s. give up, please don’t be discouraged. When you On a really good day Angela is able to say one find that cure, our daughter will be able to again word, it tends to be a one syllable word. This say the words that we so long to hear, “I love does not happen very often, to say once a month you.” might be exaggerating. Angela will try her best Thank you from the bottom of our hearts, to nod for us. But there are times when she’s just — Angela’s Mom and Dad v More ‘Pearls of Wisdom’ Submitted by Martha Elliot ([email protected]) At 84 I’ve had over 40 years of SCA, and much out how to take a bath, since the legs are not able of the time felt like a voice crying in the wilder- to get into the tub, and the room is too small for ness trying to figure out what was going on with a second person to help. a body that increasingly was difficult to manage. When it comes to falls, I found that when I was I’m one of a family of 10 or 12, depending on still stressed from a fall, I thought I was calling for how one counts, with varying manifestations of help, but I made no sound at all, so a whistle SCA, and find it very difficult to determine what would have helped. is permanent and what is not. I’m not in a sup- My previous kitchen had everything within port group as I no longer drive and my husband reach – drawers, micro, oven, sink – but in this still works, so I don’t have input from others, kitchen I cannot reach any of them, so I eat a lot but I’d like to add a little to what you’ve so kindly of cold meals. ADA planning would help. offered. An apron is helpful. Cut off the top just above Grab bars, vertical, can substitute for poles. the ties and the bottom a little below the pockets. You may have to let go of all modesty in the Adding tissues and a cordless phone can be handy. bathroom. In fact when we moved to a retire- See if there is anything available for home- ment home, we took out half of one wall so I bound. My librarian not only brings books, she could access the bathroom. Still haven’t figured is helping me learn to use my Kindle! v Gen_1502_23-43_Layout 1 7/8/15 11:19 AM Page 26
Page 26 Generations Summer 2015 Ataxia: Little Known Disorder Perplexes Doctors and Patients
By Kristin Emery Kristin Emery is a contributing writer for the Observer Publishing Company, Washington, PA.
Ed Schwartz remembers when he first started process involves a complete neurological exami- having problems with his balance. nation, MRI, family history and gene testing. “This started close to 20 years ago,” remem- What Causes Ataxia? bers Schwartz, 71, who lives in Venetia. “I would Ataxia can be a symptom of a number of get up at night to go to the bathroom and fall.” neurological conditions or caused by an injury or Doctors first told him his inner ear was out of environmental factors. NAF research shows balance and affecting his equi- about 50 percent inherit the librium. Through the years, condition with a gene defect other changes emerged. “It or mutation, another 25 started out being one thing percent can attribute their and then another and we disability to a known cause treated each one of these such as a stroke or head things,” he says. “The restless trauma and the remainder legs, the lack of sleep, the may never know the cause for breathing. All of those we their condition. treated individually and not Schwartz fits into the last until about two years ago did category and says the final we see them as a single entity.” clue to his condition came That’s when Schwartz fi- with an MRI which con- nally got a diagnosis that firmed atrophy of his cerebel- solved the medical mystery lum. “Walking is difficult,” that had been vexing him for he admits. “I walk with a wide two decades. The diagnosis Ed and his wife Linda gait. I fall regularly. I wear a was ataxia, which comes from special vest that is designed to the Greek word for disorder. The National help me counteract problems.” That vest holds Ataxia Foundation says it’s a term used to 10 pounds of weights specially designed to describe a group of neurological disorders that counterbalance him. cause problems with balance and coordinated Neuropathy contributes to his unsteadiness movement. It may also affect vision, swallowing and has also weakened his grip. The retired and speech. NAF Executive Director Michael engineer is still productive in his garage work- Parents says, “An estimated 150,000 Americans shop but has had to make adjustments. “I used to are affected by different forms of ataxia which can like to work on cars,” he says. “There’s no way I be hereditary, sporadic or caused by trauma. could reach under a fender and try to turn a nut Ataxia can strike anyone at any time regardless of now.” age, gender, or race. Unfortunately, getting a Other symptoms include difficulty sleeping proper diagnosis can take years.” Parent says that and sleep apnea, which he’s controlling with a 8 Gen_1502_23-43_Layout 1 7/8/15 11:19 AM Page 27
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C-PAP breathing machine. All of this has been a we needed one here. It has been helpful for me challenge for Schwartz and his wife, Linda, who and others in the group to share our experiences will celebrate their 50th wedding anniversary this and feelings and feel that we are not alone.” summer. But both are avid researchers and found For Ed Schwartz, finally having a correct evidence that many ataxia patients also suffer diagnosis has given him peace of mind. He gets from gluten intolerance. Schwartz eliminated physical therapy twice weekly to focus on eye gluten from his diet and says he noticed imme- exercises, balance and walking. His dietary diate improvement in digestion and his restless changes have also helped alleviate symptoms. leg syndrome. “I’ve gotten so I can stand now, I can walk now Providing Resources and Support and that is so significant,” he says. For those who are diagnosed, the NAF “Thank goodness I know what it’s about provides help and support. now,” says Schwartz. “I don’t like it but I know “Not only does the Foundation support world- what it is and I’m learning more and more all the wide ataxia research to help find treatments and time. I have set a personal mission to tell as many ultimately a cure,” says Executive Director people about this as I possibly can.” Parent, “but it offers ataxia publications for Schwartz advises others to be their own advo- physicians as well as attends various medical cates and wants to increase ataxia awareness. “I conferences to help better inform the medical want to somehow get into the medical commu- community about ataxia.” nity and let these people understand what the The Foundation offers support groups for symptoms are and what to look for so that when families including one here in Western Pennsyl- someone comes in with this they can recognize vania. Donna Eiben of South Park started the it and start helping them.” local chapter two years ago. “We have less than More information is available online at 10 members in our group and Ed was the first www.ataxia.org. member,” she says. Hereditary ataxia runs in Eiben’s family and five members have been A special thanks to Linda Ritzer for allowing us to affected. reprint this article. “It has been a very difficult life for me and as far The article originally appeared in the Observer- as I know I am not affected,” says Eiben. “There Reporter Newspaper’s Total Health magazine June was no support group in my area and I decided 2015 edition. v
Everyone who has any form of ataxia or who is at risk for ataxia is encouraged to enroll !in the CoRDS/NAF ataxia! patient registry. To register in!! the CoRDS ataxia!!!!!! patient registry, go to www.ataxia.org and click on “Ataxia! Patient Registry! .” If you prefer to enroll by postal mail, please contact CoRDS personnel. For more! information!!!!!! on CoRDS and/or enrollment,! visit!!!!!!! www.sanfordresearch.org/cords or call !!!!!! ! ! ! ! ! !!!! (605) 312-6413.! !!!! Thank you for !participating in this important research tool. ! !!!!! ! !!!!!! ! ! ! ! !!!!! !!!!!!!!! ! !! ! !
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Page 28 Generations Summer 2015 Helpful Resources
The National Ataxia Foundation does not caregivers with guidance in managing commu- endorse products, services, or manufactures. nications, equipment, pets and home hazards. Those mentioned below are included for your http://www.redcross.org/prepare/location/home- information only. The NAF assumes no liability family/disabilities for the use or contents of any product or service Center for Disease Control and Prevention mentioned. Provides many different topics and resources The National Ataxia Foundation Website related to disabilities and accessibility. The following resource links can be found on http://www.cdc.gov/ncbddd/disabilityandhealth/index the National Ataxia Foundation Website. For .html the most current information and additional resource links, please visit www.ataxia.org. Directory of Centers for Independent Genetic Information Living and Associations http://www.ataxia.org/links/ataxia-biology.aspx Provides five core services: Neurological Resources • Information and referral http://www.ataxia.org/links/neurological- • Independent living skills training resources.aspx • Individual and systems advocacy Caregiver Resources • Peer counseling http://www.ataxia.org/resources/caregivers.aspx • Transition – Transition from nursing homes and other institutions to community-based resi- NAF provides a variety of ways to connect with dences; assisting individuals to avoid institutional others affected by ataxia: placement; and transition of youth with signifi- http://www.ataxia.org/connect/default.aspx cant disabilities after completion of secondary American Red Cross education to postsecondary life. Emergencies can happen at a moment’s notice. http://www.ilru.org/projects/cil-net/cil-center-and- Tips providing people with disabilities and their association-directory 8
Individuals with SCA 1, 2, 3, 6, 8 Needed Adults with SCA1, SCA2, SCA3, SCA6, and gain a better understanding of the normal func- SCA8 are needed to participate in a research tions of the cerebellum as well as its contribu- study of cerebellar function . Testing will involve tion to ataxia. Your participation in this research a 90-minute MRI of the brain, neurological test- will help build our understanding of ataxia and ing, and cognitive (thinking and mood) testing. cerebellar function. Thank you for the gift of your The cerebellum is an integral part of the brain time. that controls balance, coordination, and eye Subjects will be paid $25 for MRI scan and movements among other vital functions. $25 for cognitive testing. However, many questions about its structure Contact Ann Fishman (Research Coordinator) and function in cerebellar syndromes remain at (410) 502-5816 or [email protected] unanswered. Through our studies, we hope to for more information. Gen_1502_23-43_Layout 1 7/8/15 11:19 AM Page 29
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DisabilityHgov diseases helps these individuals develop life skills, Disabilty.gov directs you to information that may find community ad become self-advocates so answer your questions about disability benefits they can move beyond their challenges to and other types of assistance. become strong, independent, productive adults. https://www.disability.gov/getting-help-community/ http://www.nextstepnet.org/our-programs/rare- Home Modifications to Promote Independent genetic-diseases Living Social Security https://www.disability.gov/resource/home-modifica- Do you have a question about Compassionate tions-to-promote-independent-living/ Allowances? Check out their CAL FAQs page to Disabled Sports USA find answers. Providing adaptive sports opportunities for peo- http://www.socialsecurity.gov/compassionate ple with disabilities to develop independence, allowances/ confidence and fitness through sports Tetra Society http://www.disabledsportsusa.org Dedicated to assisting people with disabilities to HomeAdvisor achieve an independent and fulfilling life, one assistive device at a time. Useful tool to help plan and budget for disability accommodation projects. http://www.tetrasociety.org/ http://www.homeadvisor.com/cost/disability- United Way 2-1-1 accommodation/ A free and confidential service that helps people Move Forward across North America find the local resources Search their national database of physical thera- they need 24/7. pists. http://www.211.org/ http://www.moveforwardpt.com/Default.aspx or http://www.moveforwardpt.com/symptomsconditions Did you know that Generations is available detail.aspx?cid=1bb9c784-a874-43b1-976f-d0de0 electronically to members? Having Generations sent 3c19f99#.VVUZ85PmUTk electronically allows you to save your issues and National AMBUCS, Inc. easily access links inside the issue with a simple click. It is a non-profit service organization consisting If you are interested in having your issue of of a diverse group of men and women who are Generations sent electronically, please contact Joan at dedicated to Creating Mobility and Independ- [email protected], call (763) 553-0020. ence for People with Disabilities. v http://www.ambucs.org/general-info/ National Center on Health, Physical Activ- ity and Disability (NCHPAD) Friedreich Ataxia A public health practice and resource center on health promotion for people with disability. Tissue Donation http://www.nchpad.org/index.php If you have Friedreich Ataxia and you are interested in the Tissue Donation Program, Next Step – Program for Youth Living with please contact Dr. Arnulf Koeppen at (518) Rare Genetic Diseases 626-6377 or [email protected]. A program for youth living with rare genetic Gen_1502_23-43_Layout 1 7/8/15 11:19 AM Page 30
Page 30 Generations Summer 2015 Improving Your Brain Health Through a Healthy, Balanced Diet
Submitted by Dana Mauro The following is submitted for information purposes and is not intended to serve as medical advice. Check with your doctor or medical professional when making any significant changes to your diet. If you have any questions, please contact Dana Mauro at [email protected]. Did you know ... brain, which affect our moods? Some of these The brain uses the carbohydrates from amino acids come from what we eat and drink. your diet, for fuel? The best type are complex For a good night’s sleep, choose food and drink carbohydrates, because they release energy slowly rich in tryptophan – such as a milk drink before and help the brain to function in a stable way. bed. (Note: This can be helpful for some ataxia Complex carbohydrates can be found in starchy sufferers, but not for those with migraine symp- foods like wholegrain bread, pasta and brown toms. It is important to brush your teeth after rice. drinking milk before retiring because it can cause For better concentration and tooth decay. If the issue is dis- mental performance, choose turbed sleep, you may talk to whole grain foods (like whole your doctor about trying 3-5 mg grain bread) instead of refined of melatonin. – Lyle Brecht, versions (like white bread). [email protected]) Avoid sweets and sugary foods. Did you know ... Did you know ... Vitamins and minerals are re- The brain needs essential fatty ally important for the function- acids like Omega 3 and Omega ing of your whole body? 6? The body cannot make these, A vitamin or mineral defi- so they have to come from your ciency can affect your mood, as diet. well as other brain functions. Omega-6 is found in foods Get a balanced diet by eating a such as poultry, eggs, avocado variety of foods, including and nuts. Dana Mauro plenty of fruit and vegetables. Omega-3 is found in oily fish like salmon, Did you know ... herring and mackerel. Plant sources include The brain is about 80% water? Drinking lots seeds, especially flax seeds, and nuts, especially of fluids will keep it functioning properly. Not walnuts. getting enough fluids can affect mood and con- Processed foods, like cakes and biscuits, centration. We lose water every day through our contain trans fats, also known as partially hydro- sweat, breath and urine. genated oils. For optimal brain health avoid trans Drink about 6 to 8 cups of non-alcoholic fat as they stop essential fatty acids from doing fluids every day. Optimal beverage choices are their work effectively. water, milk and fruit juice. Tea and coffee are Did you know ... okay but don’t get all your fluid from caffeinated Amino acids make neurotransmitters in the drinks. Sugary drinks should be avoided. v Gen_1502_23-43_Layout 1 7/8/15 11:19 AM Page 31
Summer 2015 Generations Page 31 John Mauro Named 2015 Myra Kraft Community MVP Award Winner
The Kraft family and New England Patriots idly by in silence, so I raise my voice for those Charitable Foundation’s Myra Kraft Commu- who are unable to speak.” nity MVP Awards place a spotlight on those who “There have been many friends I have met give their time to help others and exemplify through this journey who have been impacted by leadership, dedication and a commitment to ataxia, each one has enriched my life and made improving their communities through volun- me a better version of myself. I volunteer for teerism. Each year, the Kraft family and the New them and accept this award on their behalf.” England Patriots Charitable Foundation host the awards program as part of the ongoing Celebrate Volunteerism initiative in honor of Myra Kraft’s example of being a lifelong volunteer. John Mauro, NAF Board Member and Sup- port Group Leader for the Central Massachusetts Support Group, was selected as a 2015 Myra Kraft Community MVP Award winner. He has shown an incredible commitment to volunteer- ing and a dedication to his community that had not gone unrecognized by his peers. He was one of 26 volunteers who were recognized at the Patriots Chairman and CEO Robert Kraft, John Putnam Club at Gillette Stadium on June 9. Mauro, and Patriots and Pro Football Hall of www.patriotledger.com/article/20150605/BLOGS/ Famer Andre Tippett 150607497/2000/NEWS The following are videos showing the event: The day of the awards was a great day. Here is https://youtu.be/UkBgCYtfOe0 a quote by John on what it means to be selected https://youtu.be/THLlEUNFTE8 as a winner and why volunteering is important https://youtu.be/MnTuxvndCgE v to him: “I am humbled and honored by this recognition, but cannot accept this great honor for myself, but rather on behalf of all who strug- gle each day with ataxia. As a volunteer, it’s about GoodSearch making strides to create awareness of a life alter- Did you know that donating money to ing disease that affects thousands of people here the National Ataxia Foundation can be as in New England and 150,000 across the United easy as changing your search engine? GoodSearch.com donates 50 percent of its States.” revenue to charities designated by its users. “I decided a long time ago that I would not be To get started, simply go to the site and a victim of my circumstance. I am a fighter and follow the easy steps to make NAF your am meeting this challenge head on by proving to charity of choice. Then use GoodSearch as ‘ataxia’ that it cannot keep me down. As a you would any other search engine. This simple change will make a difference in the volunteer and advocate, I can offer an insider’s lives of those with ataxia! perspective on the subject of ataxia. I cannot sit Gen_1502_23-43_Layout 1 7/8/15 11:19 AM Page 32
Page 32 Generations Summer 2015 Reproductive Options: My Story By Jessica Oberlin
As I approach the celebration of my twin girls’ matter which option we would ultimately first birthday, I reflect on the journey it took to choose, it is only up to us, and will be the right bring them into the world. This journey was decision for our family. filled with emotional highs and lows and a roller- Well, my test unfortunately came back positive. coaster of events which spanned nearly two years Although I had not yet decided which path I until we reached our ultimate goal, to have a wanted to take in regards to reproduction, I healthy baby (which for us resulted in two)! quickly scheduled an appointment at a nearby My story begins October 2012 when my dad reproductive clinic which was recommended by sat me down to tell me that he carries a genetic our genetic counselor. Our reproductive doctor disease called Spinocerebellar Ataxia Type 3. He explained what takes place in PGD through IVF. had chosen this moment in time to tell me about Following is my high level overview. ataxia because he knew my husband and I The process begins with sending a cheek swab wanted to start our family soon. He explained DNA sample to the PGD laboratory. It takes that I have a 50/50 chance of also carrying the about four months for this company to create disease and if I did have it, the odds were the what they call a probe which they will later use to same for my children. He went on to tell me test the cell samples for the genetic mutation. there are options now to prevent passing the gene Once the probe is created you can then start the on to the next generation. IVF process. One round of IVF typically lasts As you can imagine this was a LOT to take in. about eight weeks, requiring the mother to take Not only did I have concern for my father multiple daily injections with the goal of creating (whose symptoms were not obvious at the time), as many eggs as possible. Once the eggs have but also for myself, my three siblings (who matured they are retrieved from the mother and shortly thereafter also learned of the disease), immediately fertilized in a test tube with the along with my future children. Here I was, ready father’s sperm. The medical term for the fertil- and excited to become pregnant, when every- ized egg is ‘embryo,’ which after three days thing was put on hold. includes about eight cells. One cell is extracted Soon after, my husband and I met with a from each embryo and shipped to the PGD lab to genetic counselor who was wonderful at test for the genetic mutation. This is completed explaining the disease and helping us to have a within 24 hours. One or more unaffected clear understanding of our options if my DNA embryos is then implanted into the mother, typ- test came back positive. The options were to ically five to six days after the eggs were retrieved. either go ahead and get pregnant the old The first pregnancy test is usually taken two fashioned way, go through the process of pre- weeks after the implantation. implantation genetic diagnosis (PGD) with in After receiving all of this information I felt vitro fertilization (IVF), not have children, or EXTREMELY overwhelmed. Not only did this adopt. He did not guide us whatsoever in one process sound like quite the opposite of what direction or the other, and assured us that no I had in mind for getting pregnant, but I was 8 Gen_1502_23-43_Layout 1 7/8/15 11:19 AM Page 33
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also still uncertain about the decision. There was embryos to work with but still hopeful that if we a part of me that wondered if this was the “right” implanted the two unaffected at least one would thing to do or if we would be messing with be successful. The preliminary results were pos- nature and God’s plan. It took several meetings itive and I was becoming more and more excited with the counselor at the reproductive clinic, as each day passed. However, two weeks later I long talks with my husband and family, and a lot was informed the pregnancy had failed. I will of praying to finally feel confident and know in never forget the moment I learned this. The ache my heart that this process would be the right in my heart and feeling of disappointment could decision for me and my family. I wanted ataxia- not have been stronger. Not only did the preg- free children, and found peace in knowing all nancy not work, but we also did not have any future generations would not have to worry additional embryos to implant. about this ever again. It is now July 2013. I took my mom’s advice At this point it was already February 2013 and and jumped right back into it. I couldn’t let the we mailed my cheek swab so my genetic probe disappointment consume me and give up. I had could be created over the next four months. As I a clear goal in sight and decided to dive into was battling depression dur- another round of IVF. My ing this time I had to force doctor recommended in- myself to pass the time with creasing the amount of hor- work and new hobbies. I mones in my injections and started art classes and took a boy, did it work! I produced couple weekend trips with 22 eggs. Thirteen of those my husband. were successfully fertilized May 2013 we were told and tested for the genetic the probe was finally ready mutation. Of those, three and we could begin the were affected, six were unaf- IVF process. From someone fected and the remainder who hates needles I was were not viable. We had two surprised to find the series Jessica, Matt, Lydia (left) and Avery of the unaffected embryos of injections were not as bad (right) Oberlin transferred October 5, 2013, as I expected. Like most things, you quickly adapt which resulted in a successful pregnancy. My and I found most of the pain with receiving a husband and I became the proud parents of two shot is in your mind. I was very lucky to have my baby girls on May 29, 2014. mom and husband not hesitate when asked to You may be wondering what happened to the give me my shots. The egg retrieval process also remaining embryos. Two of the four remaining has a reputation for being painful as it is done unaffected embryos were able to be frozen for while awake, but I found the procedure to be fast our later use (hopefully, more babies!). The and not nearly as bad as I thought it would be. I affected embryos were donated to the University was given pain relieving medication and a local of Michigan (MStem Cell Laboratories) where anesthetic which made the experience tolerable. researchers were able to create the very first After the retrieval I ended up with three eggs SCA3 disease-specific embryonic stem cell line that could be fertilized. One cell from each which is now being used in ataxia research. was sent off to be tested and resulted in two As I reflect, there are a few additional points I unaffected embryos and one affected embryo want to pass along: (each ‘embryo’ includes about eight cells). I was disappointed that we had such a small number of Continued on page 34 Gen_1502_23-43_Layout 1 7/8/15 11:19 AM Page 34
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Reproductive Options: My Story check with them first. Based on your family Continued from page 33 household income, you may qualify for financial assistance through infertility grants and scholar- • It is important to me that everyone ships. reading about my journey understands • I was concerned what others may say or there are options. Whichever path chosen to think of my decision. Although I don’t go have a child – whether conceiving naturally, around telling the general population my story, I through IVF, or adopting – it is a very personal have found that those I have shared it with have decision and your decision is the best choice for responded overwhelmingly in support and praise you. of my decision. • The process may be physically and emotion- In conclusion, as I prepare for my daughters’ ally challenging, but there is support out there. I first birthday, I know that my decision was the recommend meeting with a genetic counselor right one for my family. God has blessed us with along with someone (like me) who has gone two beautiful little girls. I am also thankful that through this experience. It can be overwhelm- our donation may benefit the ataxia research ing and you are not alone. community in finding a cure for and prevention • The cost of the PGD portion is around of this disease. $3,800 for each round and the IVF portion can If anyone is interested in learning more about exceed $17,000 per round. I learned that very my story or is in need of support as they go few insurance companies will assist in the cost of through this process, please do not hesitate to these procedures. However, you should always contact me at [email protected]. v One Ataxian’s Experience with HBOT Submitted by Ed Biniek My name is Ed Biniek. I am a 42-year-old male with ataxia. I use a walker for balance. I decided to try hyperbaric oxygen therapy (HBOT) last November. I have noticed some improvements. Better balance, sleep quality, vision, hearing, feeling or touch, speech, writing, mood, bladder and bowel functions, almost no throat seizures when eating or drinking, hands not so shaky, mind is clearer, no cramps, more energy, a lot better manual dexterity or control of hand movements. Some improvements aren’t huge, just better. I read a book on HBOT by Dr. Harch, the doctor giving me the treatments. Usually the first round is 40 treatments, a few months break, then 50 more treatments. I did 39 treatments, short break, and am on treatment four of 50. If you have questions about my experience with HBOT, you may contact me at [email protected]. Thank you for reading my story. v Ed Biniek Gen_1502_23-43_Layout 1 7/8/15 11:19 AM Page 35
Summer 2015 Generations Page 35 Live Audio Looping at the NAF Booth Submitted by Ian C. Bouras My name is Ian C. Bouras. I was diagnosed with ataxia a few years ago, and have been developing my own brand of audio looping as a re- sult (see Generations, Spring 2014, page 36). Both John Mauro and Kathy Gingerelli were gracious enough to let me perform at the NAF booth at the New York Abilities Expo held May 1-3 at the New Jersey Convention and Expo Center in Edison, New Jersey. It was such a fun experience, and meant a lot to me that my first live looping was at the NAF booth since I developed it because of ataxia. I am grateful to the NAF, John, and Kathy for the opportunity. It was a wonderful experience and I hope I helped draw some people to the booth to help spread awareness of ataxia. Here are some links I hope you find interesting: http://guitarpr.com/guitarist-ian-c-bouras-transcends-rare-neurological- disorder-with-unique-musical-style/ Ian C. Bouras https://www.youtube.com/watch?v=duUc57u26V4 https://www.youtube.com/watch?v=UfDaSFC_bIw https://www.youtube.com/watch?v=fahYBqeMkzo www.sdmprecords.com ([email protected]) v
Weill Cornell ‘The Ataxian’ Medical College Film Debuts FRDA Study The world premiere of “The Ataxian” was held A new Institutional Review Board (IRB)- at Hollywood’s “Dances approved study at Weill Cornell Medical with Films” festival on College on Friedreich Ataxia (FRDA) is June 6. The festival is recruiting patients between 18 and 30 host to inspiring film- years old. makers who want their The purpose of the study is to compare voices heard. different tests and procedures and to The film is a docu- evaluate their usefulness in assessing the mentary on Kyle Bryant, cardiac manifestations of FRDA. The study who lives with Friedreich ataxia and works requires a two-day, overnight stay in New hard to create awareness on the disease. York City. For more information, visit www.theataxian For more information, contact Gerardine movie.com or www.examiner.com/article/ Rodriguez at (646) 962-4537 or ger3001@ dances-with-films-18-the-ataxian-is-one- med.cornell.edu. awesome-documentary. Gen_1502_23-43_Layout 1 7/8/15 11:19 AM Page 36
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ted to a rehabilitation hospital in Pittsburgh. She Central PA Ataxia Support Group wanted to know if we could please reach out to Submitted by Chris Rakshys him, help him with his current challenges and Our first meeting of 2015 took place on Sat- give him some encouragement, guidance and urday, April 11. There were just six of us, and friendship. our guest speaker was none other than “Mr. Mike shared an e-mail with a couple of the Shoulder-Shrug Ataxia” himself, our very own group’s members. Although this is not in our co-leader – Mike Cammer! He got a second shot area of central/eastern PA, Ed Schwartz and his at presenting his personal story that he previ- wife Linda (Ed no longer drives) drove the 35 ously shared at the NAF AMM in Denver in miles to visit this man and be there for him. This March. It was very nice to hear from one of our is a true example of what a support group is all own, and we plan to have a different support about! group member speak as much/as little as he/she likes at future meetings. We hope this will Greater Houston Ataxia Support Group make members, both old and new alike, feel Submitted by David Brunnert more comfortable and at home with the group. We held our meeting on April 26 at The We also spent some time talking about future Women’s Hospital of Texas with 27 in atten- activities and fundraisers. Mike will look into the dance. Bonnie Sills gave us a brief overview of possibility of attending a Reading Phillies base- the AMM that was held in Denver in March. ball game as a group. He will be participating in We had a guest speaker, Dr. Partha Sarkar, the Tour de Shunk Go On 3 bike ride in UTMB Galveston, who gave an informative September in recognition of IAAD. The NAF presentation on a group of ataxias caused by will make a webpage for his event, so please be “repeat” sequences in DNA. His team recently on the lookout for this wonderful opportunity published the results of some critical research. to donate. We are planning to have a support The research validates previous research that group picnic for IAAD as well. shows a correlation between a protein called We are in the process of creating and distrib- ATXN3 and ataxia. However, Dr. Sarkar’s uting support group brochures. Hopefully, research shows the negative effects of ataxia this will help in spreading ataxia awareness and aren’t caused by ATXN3 directly. Instead, the recruiting new members from the area. ATXN3 protein attaches itself to the PNKP Support Group Member Goes Above enzyme and renders it ineffective. This is and Beyond important because in normal cells, the PNKP Co-leader Mike Cammer and I received a enzyme is continually repairing it. So ATXN3 phone call the week of May 11 from a mother isn’t causing damage, per se, its preventing of a NAF member who lives on our state. She normal repair. explained that her son, who was diagnosed with Friedreich Ataxia at age 12, was recently admit- Continued on page 38 Gen_1502_23-43_Layout 1 7/8/15 11:19 AM Page 38
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Chapter and Support Group News July 31-August 2. Our support group will be Continued from page 37 staffing the booth along with the North Texas Support Group. This leaves two potential “targets” for treat- Because pediatric patients sometimes have ment: 1) Prevent the ATXN3 from attaching to special needs that require extra attention from the PNKP, and 2) produce a surplus of PNKP. their caregivers, we have decided to schedule a My understanding is that there are drugs, already special get-together for pediatric patients prior in clinical testing for cancer patients, that are to our next regular meeting. known to do these two things. (Note, it’s not Also discussed was fundraising. There is a certain they would have the same affect in ataxia broad willingness to support fundraising patients. Nevertheless, it’s encouraging!) Finally, activities and we will be working on this is the Dr. Sarkar indicated that these results would future. probably apply to several different SCAs as well as Huntington’s disease. Northern California Ataxia Support Group Submitted by Joanne Loveland We are so excited to have our own website. Brian Wong has built this to our delight! Please check it out at https://norcalataxia.org. We had our second NCASG meeting on Saturday, April 11. A summary of the AMM in Denver was passed out at the meeting. The quarterly Newsletter (edited by Alan Acacia), the Local Area Contacts (organized by Shirley Hanks) and Dr. Rui Gao, MD (left), and Partha S. Sarkar, now our own website (built by Brian Wong) are PhD, Department of Neurology, Neuroscience ALL creating much better communication with and Cell Biology, University of Texas, Medical our members. We are all seeing an increase in Branch) inquiries about our SG. With this new momen- Everyone was impressed by Dr. Sarkar’s tech- tum people are volunteering because Alan has nical knowledge. However, what really excited been reaching out and asking members to sign everyone was learning how passionate he and his up to help our SG. We have new people who are team are to make a difference in our lives. willing to help with fundraising – which is next The Abilities Expo will be held in Houston on on our list of objectives. Woohoo! 8
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meeting. Everyone spoke of how they got India Ataxia Support Group through the winter. Submitted by Chandu Prasad George We covered a lot of topics including the fact Returning from the NAF AMM in Denver, that our group is now merged with the North we were given a hero’s welcome. It was all a East Area Ataxia Support Group Chapter, which great feeling and at the same time I was a bit includes the Central Massachusetts, Boston nervous with all the attention. Area, New Hampshire, Rhode Island and Maine Support Groups. Being on an e-mail blast with all these groups will make it easy to share ideas and even come up with new things to discuss at future meetings. One of these ideas we talked about and will implement is splitting up for a 15-20 minute interval between caregivers/family members and ataxia patients. Another topic discussed was that Athena Labs is the go-to for genetic testing and more insur- ance plans are covering than before. Also, the lab Chandu Prasad George returns to India to a will work with each individual as far as payments hero’s welcome go. Remember, sometimes getting a diagnosis can benefit future family members. Tri-State Ataxia Support Group Submitted by Kathy Gingerelli Tarheel Ataxia Support Group The Abilities Expo at the New Jersey Submitted by Ron Smith Convention and Expo Center on May 1-3 was Our support group had a great turnout on great. Members of our group showed up to help Saturday, May 2. About 30 people came to the out which was very much appreciated. I had fun White Deer Park Nature Center for our group and met a lot of new people and learned new and picnic. helpful information. What a great turnout we had for our March Continued on page 40
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Chapter and Support Group News gave an example of differences in treating the Continued from page 39 symptoms vs. finding a cure – the ultimate goal is finding the cure. There is emphasis on docu- menting the natural history of the SCA’s in Chesapeake Chapter – 32nd Annual order to assess the efficacy of potential treat- Medical Meeting ments and cures. Dr. Ashizawa is Professor of the Submitted by Carolyn Davis, President, Department of Neurology at the University of Chesapeake Chapter Florida, Gainesville; Co-Director of the Ataxia The Chesapeake Chapter’s 32nd Annual Center of Excellence there; and Executive Medical Meeting was held April 25 in Washing- Director of the McKnight Brain Institute. ton DC, and led by Joe DeCrescenzo as Dr. Massimo Pandolfo, having discovered the Master of Ceremonies. The annual meeting of FA gene, is a leading researcher of Friedreich the American Academy of Neurology ended Ataxia. He spoke of progress towards a therapy that day, and three ataxia clinicians/researchers for FA, as clinical trials are ongoing. Require- attending and speaking at the meeting graciously ments for trial design include tools to assess the agreed to address our group. All are members of progression of the disease and biomarkers to NAF’s Medical Research Advisory Board. determine the effects of the therapies. Dr. Dr. Tetsuo Ashizawa addressed the identifica- Pandolfo continues his research as Chair of the tion of the SCA’s, now numbering 36. He also Department of Neurology at Universite Libre 8
Genes in Inherited Neurologic Disorders Study #HUM00041414 Dr. Burmeister at the University of Michigan is recruiting individuals with ataxia for the research study Genes in Inherited Neurological Disorders. This study is designed to find what and how changes in the genetic material (DNA) cause inherited neurologic disorders, such as ataxia. We are recruiting individuals with inherited ataxia, their affected relatives (such as a brother or sister, a cousin, or a parent), and their unaffected family members, where possible. We are currently recruiting persons with an unknown form of ataxia, so at least one affected in your family should first be tested for the most common known causes of ataxia and found to be negative. We are recruiting both subjects with or without other affected family members. In this study, you will be asked to provide information about your symptoms and diagnosis, if other relatives are similarly affected, and about your ethnic background. You will also be asked to donate a blood sample (up to 8 teaspoons of blood) for DNA testing and related experiments. The blood sample can be drawn by your local physician; you will not need to travel to the University of Michigan. The lab has already identified several novel ataxia genes, and additional cases with newer known ataxia genes as well as mutations in genes causing other diseases involving ataxia and other, seemingly unrelated, symptoms such as tooth problems, although most subjects in our study have ataxia as main symptom. More detailed information about this study is available in the consent forms: Affected Subjects Consent, Unaffected Relatives Consent. If you would like further information or are interested in participating, please contact: Dr. Margit Burmeister, PhD or Dr. Erin Sandford Molecular & Behavioral Neuroscience Institute, University of Michigan 5063 BSRB, 109 Zina Pitcher Place Ann Arbor MI 48109-2200 Telephone: (734) 647-2186 or (734) 615-3359 Email: [email protected] or [email protected] Gen_1502_23-43_Layout 1 7/8/15 11:19 AM Page 41
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de Bruxelles-Hopital Erasme in Belgium. Dr. Brent L. Fogel has a research lab at UCLA Alabama Ataxia Support Group and was recognized last year for his use of exome Submitted by Becky Donnelly sequencing in diagnosing cerebellar ataxia. He The Alabama Ataxia Support Group held its spoke of ataxia as a symptom, not a disease, and March 28th meeting at Covenant Presbyterian of the need to rule out causes of ataxia other than Church in Homewood, AL. Our speaker, Steve genetics when making diagnoses. Dr. Fogel is Bailey of the Alabama Elder Care Council and Assistant Professor of Neurology at the Univer- Bailey Law firm, gave an update on Alabama’s sity of California, Los Angeles, and Director elder care laws, especially regarding long-term of the Ataxia and Neurogenetics Biobank care coverage. There was much interest and Program. Steve answered many questions posed by the Bailey Vernon, Health Educator for the Ataxia group. He encouraged our members to call him Center at Johns Hopkins and Leader of the Mid- with their questions and concerns. A great time Atlantic Ataxia Social Group, had a dual assign- of fellowship and a delicious lunch was enjoyed ment – to report on NAF’s Annual Membership by the 20-plus members present. Meeting and on the Ataxia Center. Johns Hop- Our May 23rd social was held at the Red Lob- kins has assembled a team of physicians and ster in Vestavia Hills, AL, with 23 members in other health professionals to treat patients with attendance. Members remembered with sadness ataxia. Bailey referred us to ataxia.org to view the the passing of a beloved member, Mike McLain presentations made at NAF’s 2015 AMM and of Camden, AL, and Doug Mason, spouse of encouraged all to attend NAF’s 2016 Annual Susan Mason and father of Chandler Abel. Membership Meeting in Orlando, FL. A flyer advertising our support group to be Two chapter members addressed the group, displayed in doctors’ offices was discussed and telling of their personal journeys with ataxia. an updated one will be created by Becky and Mike Cammer, Co-Leader of the Central Penn- distributed. sylvania Ataxia Support Group, spoke of what We looked forward to our September 26th he had to give up as the ataxia progressed but awareness event to be held in north Alabama, what he is still able to do because of determina- our October 24th meeting and luncheon in tion and adaptation. John Cernosek, an Ambas- Homewood, where we will have a disability sador for the Friedreich’s Ataxia Research judge as a speaker, and our December 12th social Alliance and a Leader of the Mid-Atlantic Young in Birmingham. Ataxia Social Group, spoke of the importance of having a support system around you – a strong New Hampshire Ataxia Support Group community of those affected by ataxia, as well as Submitted by Jill Porter friends and family. The New Hampshire Support Group met on During the meeting Libby Labash made a plea Saturday, May 30th. There were five members for all of us to support research with our time in attendance with some members sending their and our money. In attendance from Johns Hop- regrets at being unable to attend. We appreciate kins were Ann Fishman, Research Coordinator, RSVPs from our members as it helps in planning and Dr. Chiadi Onyike, Principal Investigator, the agenda and it is also an opportunity to ask for for a research study of cerebellar function. a subject to be placed on the agenda. Over 50 people attended the meeting, which afforded an opportunity to socialize before and after as well as during the lunch break. Continued on page 42 Gen_1502_23-43_Layout 1 7/8/15 11:19 AM Page 42
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Chapter and Support Group News MGH Ataxia Unit, spoke about how he has Continued from page 41 been creating awareness about the cerebellum. He recently did an interview on National Pub- This meeting focused on sharing time and lic Radio to discuss Jonathan Keleher, one of a covered many topics, one being the benefit for a handful of people who have lived their entire caregiver to seek out long-term care insurance. lives without a cerebellum. We will continue to meet on the fourth Satur- You can listen to the interview here: day of each month at the Hannaford Market in http://www.npr.org/sections/ health-shots/2015/03/ Bedford, NH. Newcomers, friends and family 16/392789753/a-man-s-incomplete-brain-reveals- are always welcome. If your travels take you near cerebellum-s-role-in-thought-and-emotion. us on one of our meeting dates, we invite you to Adam Burch, is a chiropractor who treats attend our meeting too. individuals with joint and back pain. Adam demonstrated some exercises to improve Arizona Ataxia Support Group strength and flexibility using common items found around the house (bath towel and a belt Submitted by Mary Fuchs or strap from a duffle bag). Regularly doing The Arizona Ataxia Support Group had a table these exercises will help with one’s balance, gait at the Fifth Annual D-Backs Disability & and coordination. Human Services Day on Sunday, June 7. The You can also view these exercises on line: Disability Expo began at 11:30 a.m. and ran until https://www.youtube.com/playlist? the seventh inning. We had 12 people help at the list=PL3EBDE86D65ED5747. booth. Included with the table fee we received free tickets to the game. We had fun and there Adam is in the process of creating a video of all was good traffic and lots of questions about the demonstrated exercises which will be com- ataxia. pleted at the end of the year. Dave Kulis is a Senior Research Assistant at the Anderson Lab, Woods Hole Oceanographic Institution. He also is the organizer of the New Balance Falmouth Road Race fundraiser benefiting MindLink (Dr. Schmahmann is the founder). Dave’s two children were diagnosed with AOA2 at age 17. The Kulis family want to support MindLink as it leads the way in studying the causes and clinical manifestations of disor- Left to right: Mary Fuchs, Tony Troutt (son) ders of the cerebellum, and how the brain is Frank & Jack Fuchs (husband and grandson) wired. up to enable motor control, intellect and and Matia Troutt (granddaughter) at the Fifth Annual D-Backs Disability & Human Services emotion. This wok has shed new light on the Day ataxias and related disorders, and has changed the way that doctors and scientists think about the brain and manage patients with neurological Northeast Area Ataxia Support Groups disease. Submitted by John Mauro With the upcoming Walk n’ Rolls for IAAD, At our meeting in April we had 85 people we talked about the need to get active members attend which is the largest yet. to create awareness and how to draw more Dr. Jeremy Schmahmann, Director of the people this year. 8 Gen_1502_23-43_Layout 1 7/8/15 11:19 AM Page 43
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One of the struggles I have with being support Wisconsin Ataxia Support Group group “leader” is that I’m not much of a leader. Submitted by Jenny Mathison With everyone so spread out over the state, it’s We had a great turnout for our May meeting, hard to organize a meeting that will accommo- especially considering it was held on a holiday date everyone who wants to come, setting an weekend. Bill Sweeney, the NAF’s new presi- agenda that makes it worthwhile for people to dent, came down for the meeting and we had attend, and having meetings frequently enough some good conversation about what the NAF that they would benefit our members. can do to help support the support groups and We’ve had two meetings and I am hopeful by the ataxia community in general. the number of people who have attended. We plan on starting each meeting with a meet-and- greet. I strongly encourage you to keep in contact with members that live in your area for a closer support network between meetings, and possible carpooling for future meetings. The e-mail chain can be a support group in itself. It may be beneficial to hold meetings in different areas and have members who live there host and Left to right: Martin & Jenny Mathison and set up the meeting. Kim & Rob Rosario of the Wisconsin Ataxia I’d love to hear from others on any ideas for Support Group future meetings: [email protected]. We came away with some good topic ideas for future meetings, including traveling with disabilities and helpful equipment to have. Greater Atlanta Ataxia Support Group Organizing some fundraising and ataxia aware- Submitted by Dave, Greg and Lealan ness is another hot topic that Kory and I will It was a great day, great food and great friend- brainstorm on. We hope to get some more ship at the Greater Atalanta Ataxia Support speakers in the future, including Dr. Gomez. Group Spring Picnic at Lake Lanier. v
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Page 44 Generations Summer 2015 NAF Directory of Chapters, Support Groups, Social Networks and Ambassadors
The National Ataxia Foundation has a large network of volunteers who serve as support group leaders, chapter presidents, and ambassadors for our organization. These volunteers help identify important local resources and professional care for people with ataxia and their families. If you or a family member or friend has been newly diagnosed with ataxia, please contact the NAF leader nearest you. If there is not a group in your area, we encourage you to visit our online social networks. You may also consider starting a support group in your area or becoming an NAF ambassador. If you are inter- ested in these volunteer positions please contact Lori Shogren at [email protected] or (763) 553-0020. The use of these names and contact information for any purpose other than requesting information regard- ing NAF, joining a chapter or support group without the NAF’s written permission is strictly prohibited. Social Networks E-mail: [email protected] www.ataxia.org/chapters/Tucson/default.aspx NAF BULLETIN BOARD — ARKANSAS — Moderator – Atilla and Bear AMBASSADORS www.ataxia.org/forum/toast.asp Judy and David King – Hot Springs Village, AR NAF CHAT ROOM E-mail: [email protected] Moderator – Della ([email protected]) www.ataxia.org/chapters/JudyKing/default.aspx www.ataxia.org/connect/chat-rooms.aspx NAF FACEBOOK GROUP — CALIFORNIA — www.facebook.com/group.php?gid=93226257641 LOS ANGELES AREA SUPPORT GROUP LEADERS NAF FACEBOOK FANS Bonnie Hasegawa – Hacienda Heights, CA www.facebook.com/lshogren?ref=profile#!/pages/ (626) 840-6005 National-Ataxia-Foundation/227766109304 E-mail: [email protected] NAF YOUTUBE CHANNEL Lora Morn – Santa Monica, CA www.youtube.com/user/NatlAtaxiaFound?feature=mhum (310) 664-8808 E-mail: [email protected] Chapters, Support Groups Web: http://laasg-ca.info and Ambassadors www.ataxia.org/chapters/LosAngeles/default.aspx N. CALIFORNIA AREA SUPPORT GROUP LEADER — ALABAMA — Joanne Loveland – Danville, CA ALABAMA SUPPORT GROUP LEADER E-mail: [email protected] Becky Donnelly – Hover, AL Sacramento Area Location Representatives (205) 987-2883 Donna Hoag – Lincoln, CA E-mail: [email protected] E-mail: [email protected] www.ataxia.org/chapters/Birmingham/default.aspx Teresa Bredberg – Sacramento, CA AMBASSADOR E-mail: [email protected] Dianne Blain Williamson – Huntsville, AL S.G. Website: https://norcalataxia.org (256) 429-9092 or (256) 520-4858 www.ataxia.org/chapters/NorthernCalifornia/default.aspx E-mail: [email protected] ORANGE COUNTY AREA SUPPORT GROUP LEADER www.ataxia.org/chapters/DianneWilliamson/default.aspx Cindy DeMint – Yorba Linda, CA — ARIZONA — (714) 970-1191 PHOENIX AREA SUPPORT GROUP LEADERS E-mail: [email protected] Angela Li – Peoria, AZ Daniel Navar – Montebello, CA (847) 505-4325 (323) 788-7751 E-mail: [email protected] E-mail: [email protected] Mary Fuchs – Sun Lakes, AZ www.ataxia.org/chapters/OrangeCounty/default.aspx (480) 212-6425 AMBASSADORS E-mail: [email protected] Facebook Group: Barbara Bynum – Merced, CA https://www.facebook.com/groups/arizonaataxia/ (209) 383-1275 www.ataxia.org/chapters/Phoenix/default.aspx E-mail: [email protected] AMBASSADOR www.ataxia.org/chapters/BarbaraBynum/default.aspx Bart Beck – Tucson, AZ Deborah Omictin – Hayward, CA (520) 885-8326 (510) 783-3190 8 Gen_1502_44-56_Layout 1 7/8/15 3:38 PM Page 45
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E-mail: [email protected] Kristie Adams – Savannah, GA www.ataxia.org/chapters/DeborahO/default.aspx E-mail: [email protected] Martha Elliott – Camarillo, CA www.ataxia.org/chapters/KristieAdams/default.aspx (805) 987-2490 — ILLINOIS — E-mail: [email protected] CHI-TOWN FRIENDSHIP GROUP LEADER www.ataxia.org/chapters/Camarillo/default.aspx Jonas Cepkauskas – Oak Forest, IL — COLORADO — (708) 381-5555 DENVER AREA SUPPORT GROUP LEADER E-mail: [email protected] Charlotte DePew – Aurora, CO www.ataxia.org/chapters/Chicago/default.aspx (720) 379- 6887 CHICAGO METRO AREA SUPPORT GROUP LEADER E-mail: [email protected] Facebook Group: Christopher (Topher) Marsh – Chicago, IL https://www.facebook.com/groups/denverataxia2011/ (312) 662-1127 www.ataxia.org/chapters/Denver/default.aspx E-mail: [email protected] — CONNECTICUT — www.ataxia.org/chapters/ChrisMarsh/default.aspx TRI-STATE SUPPORT GROUP LEADER AMBASSADOR Denise Mitchell – Bronxville, NY Elaine Darte – Coffeen, IL E-mail: [email protected] (618) 397-3259 www.ataxia.org/chapters/Tri-State/default.aspx E-mail: [email protected] www.ataxia.org/chapters/SouthernIllinois/default.aspx Kathy Gingerelli – Parsippany, NY (973) 334-2242 — INDIANA — E-mail: [email protected] HAPPY HOOSIERS INDIANA SUPPORT GROUP LEADER AMBASSADOR Cheryl (Cheri) Bearman – Hoagland, IN Terre Di Placito – Torrington, CT (260) 452-6231 (860) 489-5092 E-mail: [email protected] www.ataxia.org/chapters/TerreDiPlacito/default.aspx www.ataxia.org/chapters/Indiana/default.aspx — DELAWARE — — IOWA — DELAWARE SUPPORT GROUP LEADER IOWA SUPPORT GROUP LEADER Joseph DeCrescenzo – Newark, DE Emily Medina – West Des Moines, IA (302) 369-9287 (515) 727-8713 E-mail: [email protected] E-mail: [email protected] Facebook Group: https://www.facebook.com/groups/107944351294/ www.ataxia.org/chapters/DeCrescenzo/default.aspx www.ataxia.org/chapters/EmilyMedina/default.aspx — FLORIDA — — KANSAS — TAMPA BAY SUPPORT GROUP LEADER AMBASSADOR Nygel Lenz – Clearwater, FL Jalean Retzlaff – Park City, KS (727) 451-9165 (316) 303-2351 E-mail: [email protected] E-mail: [email protected] www.ataxia.org/chapters/TampaBay/default.aspx www.ataxia.org/chapters/Retzlaff/default.aspx AMBASSADOR — KENTUCKY — Meghan McBrearty – Tallahassee, FL AMBASSADOR (850) 524-9060 Janice Johnson – Brownsville, KY E-mail: [email protected] (270) 597-3854 www.ataxia.org/chapters/McBrearty/default.aspx www.ataxia.org/chapters/JaniceJohnson/default.aspx — GEORGIA — — MAINE — GREATER ATLANTA SUPPORT GROUP LEADERS MAINE SUPPORT GROUP LEADER Dave Zilles – Atlanta, GA Kelley Rollins – Bowdoinham, ME (678) 596-6751 E-mail: [email protected] E-mail: [email protected] www.ataxia.org/chapters/Maine/default.aspx Greg Rooks – Atlanta, GA — MARYLAND — (404) 822-7451 E-mail: [email protected] CHESAPEAKE CHAPTER PRESIDENT Carolyn Davis – Vienna, VA Lealan Sims – Hilton Head Island, SC (703) 759-2008 (678) 234-6600 E-mail: [email protected] E-mail: [email protected] www.ataxia.org/chapters/Chesapeake/default.aspx S.G. E-mail: [email protected] MID-ATLANTIC SOCIAL SUPPORT GROUP LEADER Facebook Group: https://www.facebook.com/groups/317380459539/ Bailey Vernon, Health Educator http://www.ataxia.org/chapters/Atlanta/default.aspx AMBASSADOR Continued on page 46 Gen_1502_44-56_Layout 1 7/8/15 3:39 PM Page 46
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NAF Directory TWIN CITIES SOCIAL GROUP Continued from page 45 Lenore Healey Schultz – Minneapolis, MN (612) 724-3784 Lutherville, MD E-mail: [email protected] (410) 616-2811 Maryann Sweeney – Minneapolis, MN E-mail: [email protected] (612) 924-4947 www.ataxia.org/chapters/JHASG/default.aspx E-mail: [email protected] AMBASSADOR www.ataxia.org/chapters/TwinCities/default.aspx Karen DeVito – Frederick, MD AMBASSADORS (301) 682-5386 Julie Schuur – Luverne, MN E-mail: [email protected] (507) 283-2555 www.ataxia.org/chapters/KarenRosenberger/default.aspx E-mail: [email protected] — MASSACHUSETTS — www.ataxia.org/chapters/JulieSchuur/default.aspx Lori Goetzman – Rochester, MN BOSTON AREA SUPPORT GROUP LEADERS (507) 282-7127 Donna Gorzela – Andover, MA E-mail: [email protected] (978) 490-9552 www.ataxia.org/chapters/LoriGoetzman/default.aspx E-mail: [email protected] Lanie Cantor – Arlington, MA — MISSISSIPPI — E-mail: [email protected] MISSISSIPPI CHAPTER PRESIDENT Group Blog: https://ataxiama.wordpress.com Camille Daglio – Hattiesburg, MS www.ataxia.org/chapters/Boston/default.aspx E-mail: [email protected] CENTRAL MA SUPPORT GROUP LEADER www.ataxia.org/chapters/Mississippi/default.aspx John and Dana Mauro – Auburn, MA — MISSOURI — (508) 736-6084 KANSAS CITY SUPPORT GROUP LEADERS E-mail: [email protected] E-mail: [email protected] Jim Clark – Gladstone, MO Facebook Group: (816) 468-7260 www.facebook.com/understandataxia? fref=ts Lois Goodman – Independence, MO www.ataxia.org/chapters/CentralMA/default.aspx (816) 257-2428 — MICHIGAN — www.ataxia.org/chapters/KansasCity/default.aspx ST. LOUIS AREA SUPPORT GROUP LEADER DETROIT AREA SUPPORT GROUP LEADER Sarah “Janeen” Rheinecker – St. Louis, MO Tanya Tunstull – Detroit, MI (417) 379-3799 (313) 736-3646 Email: [email protected] E-mail: [email protected] www.ataxia.org/chapters/StLouis/default.aspx www.ataxia.org/chapters/Detroit/default.aspx AMBASSADOR WESTERN MICHIGAN SUPPORT GROUP LEADER Roger Cooley – Columbia, MO Lynn K. Ball – Grand Rapids, MI (573) 474-7232 before noon (616) 735-2303 E-mail: [email protected] E-mail: [email protected] www.ataxia.org/chapters/RogerCooley/default.aspx www.ataxia.org/chapters/LynnBall/default.aspx — MINNESOTA — — NEW HAMPSHIRE — CENTRAL MN SUPPORT GROUP LEADER NEW HAMPSHIRE SUPPORT GROUP LEADER Marsha Binnebose – St. Cloud, MN Jill Porter – Manchester, NH (320) 248-9851 (603) 626-0129 E-mail: [email protected] E-mail: [email protected] www.ataxia.org/chapters/StCloud/default.aspx www.ataxia.org/chapters/Bedford/default.aspx — NEW JERSEY — NEW JERSEY SUPPORT GROUP LEADER Priya Mansukhani – Bridgewater, NJ (908) 685-8805 CFC Number E-mail: [email protected] www.ataxia.org/chapters/NewJersey/default.aspx The National Ataxia Foundation’s Com- Tri-State Support Group Leader bined Federal Campaign (CFC) number is Denise Mitchell – Bronxville, NY 10752. This program provides a convenient E-mail: [email protected] way to donate to the Foundation, and pro- www.ataxia.org/chapters/Tri-State/default.aspx vides a great benefit to those with ataxia. Kathy Gingerelli – Parsippany, NJ (973) 334-2242 E-mail: [email protected] 8 Gen_1502_44-56_Layout 1 7/8/15 3:39 PM Page 47
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— NEW YORK — Facebook Group: CENTRAL NEW YORK SUPPORT GROUP LEADER https://www.facebook.com/groups/1475283086068548/ www.ataxia.org/chapters/CentralPA/default.aspx Mary Jane Damiano – N. Syracuse, NY Judy Tarrants – Fabius, NY POSITIVE PEOPLE IN PA SUPPORT GROUP LEADER (315) 683-9486 Liz Nussear – Norristown, PA E-mail: [email protected] (610) 272-1502 www.ataxia.org/chapters/CentralNewYork/default.aspx E-mail: [email protected] www.ataxia.org/chapters/SEPennsylvania/default.aspx TRI-STATE SUPPORT GROUP LEADER Denise Mitchell – Bronxville, NY WESTERN PA SUPPORT GROUP LEADER E-mail: [email protected] Donna Eiben – South Park, PA www.ataxia.org/chapters/Tri-State/default.aspx (412) 655-4091 E-mail: [email protected] Kathy Gingerelli – Parsippany, NJ S.G. Website: (973) 334-2242 http://nafwesternpasupportchapter.weebly.com/ E-mail: [email protected] Facebook Group: https://www.facebook.com/wpaataxia — NORTH CAROLINA — www.ataxia.org/chapters/SouthPark/default.aspx TARHEEL SUPPORT GROUP LEADERS — RHODE ISLAND — Jerry and Tammy Hauser – Advance, NC RHODE ISLAND SUPPORT GROUP LEADER (336) 998-2942 Anabela Azevedo – Bristol, RI E-mail: [email protected] (401) 297-8627 Norma Bryant – Cary, NC E-mail: [email protected] (513) 417-9289 www.ataxia.org/chapters/RhodeIsland/default.aspx E-mail: [email protected] — SOUTH CAROLINA — Ron and Donna Smith – Garner, NC (919) 779-0414 AMBASSADOR E-mail: [email protected] Brad Forth – Greenville, SC E-mail: [email protected] (864) 415-8147 www.ataxia.org/chapters/Tarheel/default.aspx E-mail: [email protected] — OHIO — www.ataxia.org/chapters/Greenville/default.aspx GREATER CINCINNATI AREA SUPPORT GROUP LEADERS — TENNESSEE — Jennifer Mueller – Lexington, KY MIDDLE TN AREA SUPPORT GROUP LEADER (513) 284-2865 Vicki Tyler – Nashville, TN E-mail: [email protected] (615) 646-3024 Julia Soriano – Cincinnati, OH E-mail: [email protected] (513) 899-1195 www.ataxia.org/chapters/TN/default.aspx E-mail: [email protected] — TEXAS — Group Blog: http://ataxiafoundationcleveland.blogspot.com/ GREATER HOUSTON AREA SUPPORT GROUP LEADER www.ataxia.org/chapters/Cincinnati/default.aspx David Brunnert – Cypress, TX CLEVELAND AREA SUPPORT GROUP LEADER (713) 578-0607 Carmen Pieragastini – Willowick, OH E-mail: [email protected] (216) 272-5588 Facebook Group: E-mail: [email protected] https://www.facebook.com/groups/ataxia.houston/ www.ataxia.org/chapters/Cleveland/default.aspx www.ataxia.org/chapters/Houston/default.aspx — OREGON — NORTH TEXAS SUPPORT GROUP LEADER WILLAMETTE VALLEY SUPPORT GROUP LEADER David Henry Jr. – Trophy Club, TX Jason Wolfer – Gervais, OR (817) 739-2886 (contact by e-mail preferred) (503) 502-2633 E-mail: [email protected] E-mail: [email protected] www.ataxia.org/chapters/NorthTexas/default.aspx Facebook Group: AMBASSADORS https://www.facebook.com/groups/388993597939205/ Dana LeBlanc – Orange, TX www.ataxia.org/chapters/Willamette/default.aspx (409) 883-5570 — PENNSYLVANIA — E-mail: [email protected] www.ataxia.org/chapters/GoldenTriangle/default.aspx CENTRAL PA SUPPORT GROUP LEADER Debra Whitcomb – El Paso, TX Christina Rakshys – Allentown, PA (915) 329-0721 (610) 395-6905 E-mail: [email protected] E-mail: [email protected] www.ataxia.org/chapters/Whitcomb/default.aspx Michael Cammer – Downingtown, PA (610) 873-1852 E-mail: [email protected] Continued on page 48 Gen_1502_44-56_Layout 1 7/8/15 3:39 PM Page 48
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NAF Directory E-mail: [email protected] Continued from page 47 www.ataxia.org/chapters/McLaughlin/default.aspx — WISCONSIN — WISCONSIN SUPPORT GROUP LEADER — UTAH — Jenny Mathison – Madison, WI UTAH SUPPORT GROUP LEADERS (608) 285-5285 Grant Beutler – Salt Lake City, UT E-mail: [email protected] E-mail: [email protected] www.ataxia.org/chapters/Wisconsin/default.aspx Jenny Durrant – North Ogden, UT International E-mail: [email protected] Lisa Ord, PhD, LCSW – Salt Lake City, UT Support Groups & Ambassadors (801) 587-3020 E-mail: [email protected] — CANADA — Facebook Page: www.facebook.com/utahataxia S.G. Website: www.utahataxia.org OTTAWA SUPPORT GROUP LEADER www.ataxia.org/chapters/Utah/default.aspx Prentis Clairmont – Ottawa, Ontario (613) 864-8545 — VIRGINIA — E-mail: [email protected] Facebook Group: CHESAPEAKE CHAPTER PRESIDENT https://www.facebook.com/groups/1468963499991380/ Carolyn Davis – Vienna, VA www.ataxia.org/chapters/Ottawa/default.aspx (703) 759-2008 — INDIA — E-mail: [email protected] www.ataxia.org/chapters/Chesapeake/default.aspx INDIA SUPPORT GROUP LEADER “Seek a Miracle Ataxia Group” (SAMAG) — WASHINGTON — Chandu Prasad George SEATTLE AREA SUPPORT GROUP LEADER Hyderabad, Secunderabad, India Milly Lewendon – Kirkland, WA Mobile: 0091-9989899919, 0091-9885199918 (425) 823-6239 E-mail: [email protected] E-mail: [email protected] S.G. E-mail: [email protected] www.ataxia.org/chapters/Seattle/default.aspx Facebook Group: https://www.facebook.com/ataxiain AMBASSADOR S.G. Website: www.ataxia.in Linda Jacoy – Spokane, WA www.ataxia.org/chapters/Chandu/default.aspx (509) 482-8501 — PAKISTAN — E-mail: [email protected] AMBASSADOR www.ataxia.org/chapters/Spokane/default.aspx Sajjad Jaider – Sindh, Pakistan Sherry McLaughlin – Port Townsend, WA 0092-(300) 8221850 (360) 344-2445 E-mail: [email protected] v Gen_1502_44-56_Layout 1 7/8/15 3:39 PM Page 49
Summer 2015 Generations Page 49 Calendar of Events The most current event information is available on the NAF website, www.ataxia.org. SUPPORT GROUP MEETINGS Time: Noon – 2 p.m. Location: Muhlenberg Community Library, 3612 — Saturday, July 18, 2015 — Kutztown Rd., Laureldale (Reading), PA 19605 Denver Area Ataxia Support Group Meeting Details: For additional information contact Chris Time: 1 – 4 p.m. Rakshys at (610) 395-6905 or cpa.ataxia@ Location: Swedish Medical Center, Spruce C Meet- rcn.com or Mike Cammer at (610) 996-5814 or ing Rm., Second Floor, 501 E. Hampden Ave., En- [email protected]. glewood, CO 80113 New Hampshire Ataxia Support Group Meeting Details: For more information contact Charlotte Time: 10 – Noon DePew at (720) 379-6887 or cldepew77@ Location: Hannaford Market, 5 Colby Ct., Bedford, comcast.net. NH Greater Atlanta Ataxia Support Group Meeting Details: For more information or to RSVP contact Time: 1 p.m. Jill Porter at (603) 626-0129 or jilleporter@ Location: Emory Center for Rehabilitation Medi- comcast.net. cine, 1441 Clifton Rd. NE, Rm. 101, Atlanta, GA — Saturday, August 1, 2015 — 30322 Details: For more information call (404) 822-7451 Boston Ataxia Support Group Meeting or [email protected]. Time: Noon – 2 p.m. Location: Lahey Clinic, 41 Mall Rd., Burlington, MA NCASG – New Sacramento Area Location Meeting Details: For more information contact Lanie Cantor Time: 10 – 11:45 a.m. at [email protected] or Donna Gorzela at Location: Pocket Library, 7335 Gloria Dr., Sacra- (978) 490-9552. ment, CA 95831 Details: Attending a “Fall Prevention 101” work- — Saturday, August 8, 2015 — shop. For additional information contact Teresa Central Minnesota Ataxia Support Group Meeting Bredberg at [email protected]. Time: 9:45 – 11:45 a.m. Twin Cities Ataxia Social Group Meeting Location: Harvest Bank Branch, 24952 County Time: 10 a.m. on the third Saturday of every month Road 7, St. Augusta, MN 56301 (approximately two hours) Details: For additional information contact Marsha Location: Langton Place in Roseville at 1910 W. Binnebose at (320) 248-9851 or mbinnebose@ County Rd. D, Roseville, MN 55112 hotmail.com. Details: For additional information contact Lenore Kansas City Ataxia Support Group Meeting Healey Schultz at (612) 724-3784 or schultz. Time: 2 – 4 p.m. [email protected]. Location: Northeast Library, 6000 Wilson Rd., — Sunday, July 19, 2015 — Kansas City, MO Details: For more information contact Lois Good- Chi-town Ataxia Friendship Group Meeting man at (816) 257-2428 or Jim Clark at (816) 468- Time: 1 p.m. on the third Sunday of odd-numbered 7260. months Location: Good Samaritan Hospital (White/Blue North Texas Ataxia Support Group Meeting Oak Rm.), 3815 Highland Ave., Downers Grove, IL Time: 10 a.m. – Noon 60515 Location: Ben Washington Baptist Church, 615 Details: For additional information contact Jonas Davis St., Irving, TX 75061 Cepkauskas at (708) 381-5555 or jonas@chitown Details: The meeting room is in a separate build- ataxia.org. ing from the church. For more information contact David Henry at [email protected]. — Saturday, July 25, 2015 — Central PA Ataxia Support Group Meeting Continued on page 50 Gen_1502_44-56_Layout 1 7/8/15 3:39 PM Page 50
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Calendar of Events — Saturday, August 22, 2015 — Continued from page 49 New Hampshire Ataxia Support Group Meeting Time: 10 – Noon — Wednesday, August 12, 2015 — Location: Hannaford Market, 5 Colby Ct., Bedford, Willamette Valley Ataxia NH Support Group Meeting – Albany Details: For more information or to RSVP contact Time: 11:30 a.m. – 1 p.m. on the second Wednes- Jill Porter at (603) 626-0129 or jilleporter@ day of every month comcast.net. Location: 400 NW Hickory, Albany, OR 97321 — Sunday, August 30, 2015 — Details: For more information contact Jason Wolfer Willamette Valley Ataxia Support Group at (503) 502-2633 or [email protected]. Meeting – Portland — Thursday, August 13, 2015 — Time: 3 – 4:30 p.m. every 6th Sunday St. Louis Area Ataxia Support Group Meeting Location: Public Library at 10723 SW Capitol High- Time: 5:30 – 7:30 p.m. Meetings will be held on way, Portland, OR the second Thursday of every month. Details: For more information contact Jason Wolfer Location: Washington University Medical Center, at (503) 502-2633 or [email protected]. 4444 Forest Park Ave., Rm. 509, St. Louis, MO — Wednesday, September 9, 2015 — 63108 Willamette Valley Ataxia Support Group Details: For additional information contact Janeen Meeting – Albany Rheinecker at (417) 379-3799 or stlataxia@ gmail.com. Time: 11:30 a.m. – 1 p.m. on the second Wednes- day of every month — Saturday, August 15, 2015 — Location: 400 NW Hickory, Albany, OR 97321 Orange County Ataxia Support Group Meeting Details: For more information contact Jason Wolfer Time: 2 – 4 p.m. on the third Saturday of every at (503) 502-2633 or [email protected]. other month. — Thursday, September 10, 2015 — Location: Orange Coast Memorial Medical Center, 9900 Talbert Ave., Foundation Valley, CA 92708 St. Louis Area Ataxia Support Group Meeting Details: For more information contact Daniel Navar Time: 5:30 – 7:30 p.m. Meetings will be held on at (323) 788-7751 or [email protected] or the second Thursday of every month. Cindy DeMint at (714) 970-1191 or cindyoc Location: Washington University Medical Center, [email protected]. 4444 Forest Park Ave., Rm. 509, St. Louis, MO 63108 Twin Cities Ataxia Social Group Meeting Details: For additional information contact Janeen Time: 10 a.m. on the third Saturday of every month Rheinecker at (417) 379-3799 or stlataxia@gmail. (approximately two hours) com. Location: Langton Place in Roseville at 1910 W. County Rd. D, Roseville, MN 55112 Tri-State Ataxia Support Group Potluck Meeting Details: For additional information contact Lenore Time: 6:30 – 8:30 p.m. Healey Schultz at (612) 724-3784 or schultz. Location: Beth Israel Medical Center, Phillips Am- [email protected]. bulatory Care Center (PACC), Second Floor Confer- ence Room, 10 Union Square East, New York, NY — Sunday, August 16, 2015 — Details: For more information contact Denise Greater Houston Area Ataxia Support Group Mitchell at [email protected] or Kathy Meeting Gingerelli at [email protected]. Time: 2 – 4 p.m. — Saturday, September 12, 2015 — Location: The Women’s Hospital of Texas, 7600 Fannin St., Houston, TX Central Minnesota Ataxia Support Group Meeting Details: For more information contact Bonnie Sills Time: 9:45 – 11:45 a.m. at (713) 944-5183 or [email protected] or David Location: Harvest Bank Branch, 24952 County Brunnert at (713) 578-0607 or david.brunnert@ Road 7, St. Augusta, MN 56301 sbcglobal.net. Details: For additional information contact 8 Gen_1502_44-56_Layout 1 7/8/15 3:39 PM Page 51
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Marsha Binnebose at (320) 248-9851 or e-mail Time: 9:45 – 11:45 a.m. [email protected]. Location: Harvest Bank Branch, 24952 County North Texas Ataxia Support Group Meeting Road 7, St. Augusta, MN 56301 Time: 10 a.m. – Noon Details: For additional information contact Marsha Location: Ben Washington Baptist Church, 615 Binnebose at (320) 248-9851 or mbinnebose@ Davis St., Irving, TX 75061 hotmail.com. Details: The meeting room is in a separate build- Kansas City Ataxia Support Group Meeting ing from the church. For more information contact Time: 2 – 4 p.m. David Henry at [email protected]. Location: Northeast Library, 6000 Wilson Rd., Positive People in PA Ataxia Support Group Kansas City, MO Meeting Details: For more information contact Lois Good- Time: 10 – 11:30 a.m. man at (816) 257-2428 or Jim Clark at (816) 468- Location: Mercy Suburban Hospital, Second Floor 7260. Walk-up Room. North Texas Ataxia Support Group Meeting Details: Lunch follows at Applebee’s across the Time: 10 a.m. – Noon street. RSVP is required by Thursday prior to the Location: Ben Washington Baptist Church, 615 meeting. To RSVP or for more information contact Davis St., Irving, TX 75061 Liz Nussear at (610) 272-1502 or at [email protected]. Details: The meeting room is in a separate build- — Saturday, September 19, 2015 — ing from the church. For more information contact David Henry at [email protected]. Twin Cities Ataxia Social Group Meeting Northern California Ataxia Support Group Meeting Time: 10 a.m. on the third Saturday of every month (approximately two hours) Time: 11:30 a.m. – 2 p.m. Location: Langton Place in Roseville at 1910 W. Location: Our Savior’s Lutheran Church, 1035 County Rd. D, Roseville, MN 55112 Carol Ln., Lafayette, CA Details: For additional information contact Lenore Details: For more information or to RSVP contact Healey Schultz at (612) 724-3784 or schultz. Joanne Loveland at (952) 323-6895 or joanne [email protected]. [email protected]. — Sunday, September 20, 2015 — Tampa Bay Ataxia Support Group Meeting Time: 12:30 – 3 p.m. Chi-town Ataxia Friendship Group Meeting Location: Morsani Center, 13330 USF Laurel Dr. Time: 1 p.m. on the third Sunday of odd-numbered #1013, Tampa, FL 33612 months Details: For more information contact Nygel Lenz at Location: Good Samaritan Hospital (White/Blue (727) 451-9165 or [email protected]. Oak Room), 3815 Highland Ave., Downers Grove, IL 60515 — Wednesday, October 14, 2015 — Details: For additional information contact Jonas Willamette Valley Ataxia Support Group Cepkauskas at (708) 381-5555 or jonas@chitown Meeting – Albany ataxia.org. Time: 11:30 a.m. – 1 p.m. on the second Wednes- — Thursday, October 8, 2015 — day of every month Location: 400 NW Hickory, Albany, OR 97321 St. Louis Area Ataxia Support Group Meeting Details: For more information contact Jason Wolfer Time: 5:30 – 7:30 p.m. Meetings will be held on at (503) 502-2633 or [email protected]. the second Thursday of every month. Location: Washington University Medical Center, INFORMATIONAL, AWARENESS, AND 4444 Forest Park Ave., Rm. 509, St. Louis, MO IAAD EVENTS AND FUNDRAISERS 63108 Thursday, July 16, 2015 Details: For additional information contact Janeen Rheinecker at (417) 379-3799 or stlataxia@gmail. KML 3 vs. 3 Soccer Tournament com. Time: 6 – 8 p.m. Location: Kettle Moraine Lutheran High School, — Saturday, October 10, 2015 — Central Minnesota Ataxia Support Group Meeting Continued on page 52 Gen_1502_44-56_Layout 1 7/8/15 3:39 PM Page 52
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Calendar of Events — September or October TBD, 2015 — Continued from page 51 Northern CA Walk n’ Roll for Ataxia IAAD Event and Fundraiser 3399 Division Rd., Jackson, WI 53037 Location: TBD Details: Tournament benefits the National Ataxia Details: All proceeds benefit the National Ataxia Foundation (NAF). For more information contact Foundation (NAF). For more information contact Barry Washburn at [email protected]. Brian Petersen at [email protected]. www.ataxia.org/walk/concord — Sunday, July 26, 2015 — — October TBD, 2015 — 25th Anniversary of ADA Details: July 26th is the 25th anniversary of the Concord Walk n’ Roll for Ataxia signing of the Americans with Disabilities Act! IAAD Event and Fundraiser http://adaanniversary.org/ Location: TBD Details: All proceeds benefit the National Ataxia — Friday, July 31 – Sunday, August 2, 2015 — Foundation (NAF). For more information contact Houston Abilities Expo Joann Loveland at joanneloveland@gmailcom. Time: Friday and Saturday 11 a.m. – 5 p.m., Sun- www.ataxia.org/walk/lafayette day 11 a.m. – 4 p.m. — Saturday, September 12, 2015 — Location: NRG Center (Formerly Reliant Center), Minnesota Walk Stroll n’ Roll for Ataxia Hall E IAAD Event and Fundraiser Details: Admission is free. Time: Social Hour 9 – 10 a.m., Walk and Program www.abilities.com/houston at 10 a.m. — Saturday, August 8, 2015 — Location: Wolfe Park, 3700 Monterey Dr., St. Louis Walk for Dave Park, MN 55416 Time: 9 a.m. – Noon Details: Wolfe Park is kid and pet friendly. No registration fee – donations only. All proceeds Location: Ononsaga Lake Park, (Bay View Tent at benefit the National Ataxia Foundation (NAF). For Willow Bay), 7199 Onondaga Lake Park Trl., Liver- more information or to volunteer please visit pool, NY 13088 the event website or contact Terry Sweeney at Details: Registration is $10 per participant. This (612) 763-9320 or [email protected]. walk is dedicated to the memory of David Alessi. www.ataxia.org/walk/minnesota Visit the website to register. For additional infor- New England Walk n’ Roll for Ataxia mation please contact Marc Alessi at (615) 622- 3976 or [email protected]. All Proceeds IAAD Event and Fundraiser to benefit the National Ataxia Foundation (NAF). Time: 9 a.m. – Noon https://naf.myetap.org/fundraiser/15walk4dave/ Location: Rocketland, Auburn, MA Details: All proceeds benefit the National Ataxia — Saturday, August 29, 2015 — Foundation (NAF). For more information visit the Macy’s “Shop for a Cause” event website or contact John Mauro at (508)736- Details: Just in time for “Back to School” shop- 6084 or [email protected]. ping! One-day-only sales event at Macy’s stores www.ataxia.org/walk/auburn nationwide. Card holders receive a 30% discount https://www.facebook.com/events/78630319481 on regular, sale, and clearance items, including 0958/ home. Even save on most brands usually excluded. — Sunday, September 13, 2015 — Card holders will also save 10% on electronics, watches, furniture, and rugs. Exclusions apply. Card Denver Walk n’ Roll for Ataxia holders are also eligible to register to win a $500 IAAD Event and Fundraiser Macy’s gift card. All Macy’s Card orders must be Time: Registration begins at 8 a.m. received by August 21. For more information please Location: Denver City Park Pavilion, Denver, CO contact NAF at (763) 553-0020. All proceeds Details: All proceeds benefit the National Ataxia benefit the National Ataxia Foundation (NAF). Foundation (NAF). For more information visit the https://www.ataxia.org/macyscard event website or contact Charlotte DePew at 8 Gen_1502_44-56_Layout 1 7/8/15 3:39 PM Page 53
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(720) 379-6887 or [email protected]. participate in some activity, creating awareness www.ataxia.org/walk/denver about ataxia. You could share something you know — Friday, September 18-20, 2015 — about ataxia with one other person who has never heard of it, educate a group of people by speaking Boston Abilities Expo at a school or civic group, contact the media, or Time: Friday and Saturday 11 a.m. – 5 p.m., Sun- raise financial support. International Ataxia Aware- day 11 a.m. – 4 p.m. ness Day has grown over the years, and more Location: Boston Convention & Exhibition Center, ideas keep coming in. You can download the IAAD Hall C kit which contains ideas for involvement, and view Details: Admission is free. the Ataxia Presentation found on the IAAD webpage www.abilities.com/boston and event on Facebook at https://www.facebook. com/events/1375274836132615/. — Saturday, September 19, 2015 — Tell us how you recognized International Ataxia Atlanta Walk n’ Roll for Ataxia Awareness Day (IAAD) and share a photo with us IAAD Event and Fundraiser for a future issue of “Generations.” Please email Time: Registration 9 a.m., Walk 10 a.m. your story/photo to [email protected] or mail to the Location: Shorty Howell Park, 2750 Pleasant Hill National Ataxia Foundation, Attn: Generations Rd., Duluth, GA 30096 Editor, 2600 Fernbrook Lane, Suite 119, Min- Details: All proceeds benefit the National Ataxia neapolis, MN 55447-4752. Your stories on how Foundation (NAF). For more information visit the that day was recognized could live on in a future event website or contact Greg Rooks at (404) 822- issue of Generations. Please send us your articles, 7451 or [email protected]. photos, and proclamations so the entire NAF www.ataxia.org/walk/atlanta community can relive this historic day. The Ataxia Hoedown at the Seton Corral www.ataxia.org/events/international-ataxia-aware IAAD Event and Fundraiser ness-day.aspx Time: 5 – 10 p.m. #ataxiaspinchallenge Location: Elizabeth Ann Seton Parish Hall, 345 IAAD Event and Fundraiser Bear-Christiana Rd., bear, DE 19701 Details: The #ataxiaspinchalenge was created to Details: In recognition of IAAD and Cathy De- raise awareness of a non-curable, non-treatable dis- Crescenzo’s 50+10 Birthday. Country Hoedown ease ... ataxia. On the event website you can learn featuring a Chuck Wagon Buffet, DJ, Line Dancing about “The Challenge,” register and/or start a and a Chinese Auction. In lieu of an admittance fee team to share your story, and challenge others. All or gifts, donations are requested and all proceeds proceeds benefit the National Ataxia Foundation benefit the National Ataxia Foundation (NAF). For (NAF). For more information visit the event website. more information visit the event website or contact https://naf.myetap.org/fundraiser/15spinners/ Joe or Cathy DeCrescenzo at (302) 369-9287 or Central PA Support Group Ataxia Awareness Table [email protected]. IAAD Event and Fundraiser https://naf.myetap.org/fundraiser/15hoedown/ Time: 5 – 9 p.m. — Sunday, September 20, 2015 — Location: Boscov’s, Exton Square Mall, 260 Exton Tour de Shunk – Go On 3! Square Pkwy., Exton, PA 19347 IAAD Event and Fundraiser Details: We will also be selling Boscov’s Friends Details: I’m Mike Cammer and I have ataxia. This Helping Friends shopping passes for $5. Pass hold- year on September 20, I am entering the “Tour de ers will receive 1–25% off shopping on October 20 Shunk” for the second year in a row. I plan to ride at Boscov’s. All proceeds benefit the National the entire 102 miles. Please help support me on Ataxia Foundation. For more information contact my challenge to “Go On 3! For ataxia awareness.” Mike Cammer at (610) 996-5814 or michael. All proceeds benefit the National Ataxia Foundation [email protected]. (NAF). For more information visit the event website. Team KR Endurance https://naf.myetap.org/fundraiser/15GoOn3/ IAAD Event and Fundraiser — Friday, September 25, 2015 — Details: Join us in this virtual run event. From this International Ataxia Awareness Day (IAAD) Details: The goal of IAAD is for every individual to Continued on page 54 Gen_1502_44-56_Layout 1 7/8/15 3:39 PM Page 54
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Calendar of Events 655-4091 or [email protected]. Continued from page 53 www.ataxia.org/walk/wpa Utah Walk n’ Roll for Ataxia site you can register for a virtual 5K, 10K or 13.1- IAAD Event and Fundraiser mile run. Once you register a personal fundraising Location: To be determined page will be generated for you. Personalize your Details: All proceeds benefit the National Ataxia page and let everyone know! Participants that raise Foundation. For more information contact Jenny $30 or more receive a complementary t-shirt. All Durrant at (801) 721-7140 or jenny@utah proceeds benefit the National Ataxia Foundation. ataxia.org. For more information visit the website or contact www.ataxia.org/walk/utah KR Endurance at [email protected]. https://naf.myetap.org/fundraiser/15nafrun/about — Saturday, October 3, 2015 — Event.do AZ Shop ‘til you Drop Craft & Vendor Fair Warriors4Awareness IAAD Event and Fundraiser IAAD Event and Fundraiser Time: 9 a.m. – Noon Locations: Winder Barrow & Heartwell Speedways Location: Disability Empowerment Center, 5025 E. Details: Warriors4Awareness is the name for the Washington, Phoenix, AZ 85034 team of drivers that have committed to race in sup- Details: Free event. Donations accepted. Health port of the National Ataxia Foundation by donating and Wellness vendors, a Chinese auction, 50/50 and challenging their fans to match the donations. Raffle and kids games and prizes. All proceeds Drivers are donating $5 for 1st place, $3 for 2nd benefit the National Ataxia Foundation(NAF). For thru 10th and $1 for any other finish. All proceeds more information about attending or exhibiting benefit the National Ataxia Foundation (NAF). For contact Angela Li at (847) 505-4325 or angelali more information visit the website. [email protected] or Mary Fuchs at (480) 212-6425 https://naf.myetap.org/fundraiser/warriors4aware or [email protected]. ness/ — Saturday, October 10, 2015 — — Saturday, September 26, 2015 — Tea Time for Ataxia OC/LA Walk n’ Roll for Ataxia IAAD Event and Fundraiser IAAD Event and Fundraiser Time: 11:00 a.m. – 1:00 p.m. or 1:30 – 3:30 p.m. Locations: NEW LOCATION East Lake Village Com- Location: Aubrey Rose Tea Room, La Mesa, CA munity Association Club House and Parking Lot, Details: Cost is $35 per person. All proceeds ben- 5325 Village Center Dr., Yorba Linda, CA 92886 efit the National Ataxia Foundation (NAF). For more Details: We will have a DJ, opportunity drawings for information contact Jane Jaffe at (619) 286-9745 participants, vendors showing their product/ or [email protected]. services, children’s activities and a chance to — Saturday October 31, 2015 — unite with others affected by ataxia. All proceeds benefit the National Ataxia Foundation (NAF). Michigan Walk n’ Roll for Ataxia For more information visit the event website or IAAD Event and Fundraiser contact Daniel Navar at (323) 788-7751 or Time: Registration 8:30 – 9:00 a.m., Symposium [email protected], Cindy DeMint at (714) 329- 9:00 a.m., Luncheon 11:30 a.m., Walk 1:00 p.m. 4437 or [email protected], or Lora Morn Location: University of Michigan Biomedical Sci- at (310) 664-8808 or [email protected]. ence Research Building (BSRB), 109 Zina Place, www.ataxia.org/walk/ocla 5031 BSRB, Ann Arbor, MI 48109 Western PA Walk n’ Roll for Ataxia Details: All proceeds benefit the National Ataxia IAAD Event and Fundraiser Foundation (NAF). For more information contact Elizabeth Sullivan at (734) 232-6247 or eliz- Time: 10:00 a.m. – Noon [email protected] or Tanya Tunstull at (313) 763- Location: Check-in South Park (main children’s 2827 or [email protected]. playground), The walk will take place along Corri- www.ataxia.org/walk/michigan gan Dr., South Park, PA 15129 v Details: All proceeds benefit the National Ataxia Foundation (NAF). For more information visit the Please help us keep your information and schedules event website or contact Donna Eiben at (412) up-to-date by e-mailing updates to [email protected]. Gen_1502_44-56_Layout 1 7/8/15 3:39 PM Page 55
Summer 2015 Generations Page 55 Memorials and In Your Honor The National Ataxia Foundation is grateful to those who have made contributions in memory or in honor of their friends and families whose names are listed below. This list reflects contributions made in April through May 2015. We are sorry that we cannot separate the memorial contributions from those made in honor of someone, as sometimes the person making the contribution does not let us know if the contribution is a memorial or in honor of their friend or family member. Chandler Abel Ben Cantor Kurt Gunning Rick Moran Cheryl Serge Debi Adair Sue Casey Gary Hartsock Robert Pacora Michael Shears Matthew Agostini Abe Cavazos Heather Hawkins Norma Payne Stephen Shears David Alessi Tiffinay Compiano John Heimann John Pellegrino Kathryn Smithers Crystal Allsopp Janet Coyne Krista Humes Rita Stafford Family Neighborhood Brad Dalton Ann Hunt Powell-Lobascio Jack Swale Charter School Alex Bonnie Huston Allen Prather Chris Tatti Atlanta, GA Detschermitsch Marilyn Jackson Jim Richards John Tatti Cheri Bearman Dawn Dizon Lisa Jaffe Sherri Richwine MoEng Teo Clair Beck Marcus Dowty Erin Kiernan Janet Riley Ronald Thierfelder Betty Beck Jim Drakos Jamie Kosieraki Ellen Rogers Bruce Thomas Robert Bitner Teresa Drakos Michael Leader Rocco Rotolo Dolores Thomas Fred Blasberg Arlo Drury Jennifer Leader Christina Patricia Tobias David Brown William Evens Adrian Lund Rozenberg Margaret Tseng Ruth Buckley Leslie Evens David Mason David Sakakura Barry Washburn Jen Buehler Vincent Ferranti Linda Meier Don Schut Donna Weaver Linda Burgher Gregson Gann Mrs. Mendoza Ed Schwartz David Westrick Mike Cammer Melvin Goodman Dorothy Moetsch Derek Semler Rudy Yurong v Sometimes By Dennis Cullington I drop things all the time. Response: Sometimes I drop things. It takes me forever to get dressed. Response: Sometimes I can’t find a thing to wear. Toothpaste goes all over the place. Response: Sometimes I’m pretty sloppy. People don’t understand what I am saying. Response: Sometimes I feel the same way. I just want to be listened to and ...... Response: Sometimes I know what you mean. I want people to acknowledge the depth and reality of my struggle. Response: Sometimes I just have to suck it up and move on. I have Ataxia Response: Sometimes..... “Oh,” What is Ataxia? A Foreign Cab? Gen_1502_44-56_Layout 1 7/8/15 3:39 PM Page 56
National Ataxia Foundation Non-Profit 2600 Fernbrook Lane, Suite119 Organization Minneapolis, MN 55447-4752 U.S. Postage (763) 553-0020 PAID Madison, SD Permit No. 32
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Looking for Ataxia Merchandise? Please see page 23 or visit our store at www.ataxia.org! ______
GIFT – HONOR – MEMORIAL MEMBERSHIP A contribution given in memory of a friend or Yes, I want to help fight ataxia! Enclosed is my relative is a thoughtful and lasting tribute, as membership donation. (Gifts in U.S. Dollars) are gifts to honor your friends or family. A q Lifetime membership – $500 Gift Membership is a wonderful gift to a friend Annual Memberships: or relative for special occasions like birthdays, q Patron membership –$100-$499 graduations, anniversaries, and holidays. NAF q Professional membership – $55 will acknowledge your gift without reference to q Individual – $35 q Household – $55 the amount. q Addresses outside the U.S. please add $15 Simply fill out this form and mail with your check Recurring Gift Membership Program: or credit card information to the National Ataxia If you wish to contribute monthly or quarterly, please Foundation. consider the Recurring Gift Membership Program. Honor/Memorial envelopes are available free of For more information contact the NAF office or visit charge by writing or calling NAF. www.ataxia.org/giving/default.aspx. My contribution is: Name ______q In Memory q In Honor q Gift Membership Address ______Name ______City/State/Zip ______Occasion ______Phone ______Send Acknowledgment Card to: E-Mail ______q Name ______Yes, sign me up for NAF e-mails Address ______PAYMENT INFORMATION City/State/Zip ______Gifts are tax deductible under the fullest extent of the law. From: q Check. Please make payable to the NAF. Name ______Total Amount Enclosed $ ______Address ______Credit Card: q Visa q MasterCard q Discover City/State/Zip ______Name on Card ______Card #______Is your address correct? Are you receiving more Exp. Date ______CVV # ______than one issue of Generations? If there are any changes that need to be made, please call NAF at Signature ______(763) 553-0020 or e-mail [email protected]. Phone Number ______43-2