Gen_1304_01-12_Layout 1 12/11/13 3:36 PM Page 1 Generations SPECIAL EXPANDED EDITION The Official Publication of the National Ataxia Foundation Volume 41, Number 4 Winter 2013-14 The National Ataxia Foundation Board of Directors and the Western Regional Support Groups invite you to attend the National Ataxia Foundation 57th Annual Membership Meeting “Betting on Ataxia Research” Las Vegas, Nevada – March 21-23, 2014 The 2014 Annual Meeting General Sessions will Educate, Inspire, and Inform As in past annual meetings, the General adult healthcare for youth and young adults with Sessions for the 2014 National Ataxia Founda- disabilities will address the challenges of adoles- tion Annual Membership Meeting, “Betting on cence related to development of autonomy and Ataxia Research,” includes a distinguished group identity, and the expectations and demands of of speakers who will provide the most current the adult healthcare system. The role of whole research and clinical practices in the field of exome sequencing is a hot new topic for all ataxia. The complete meeting agenda, listed on hereditary diseases. How this will affect genetic pages 19-24, includes some topics that are new testing for the ataxias will be discussed, as well to the meeting. Aspects of transitioning into as the various forms of acquired and idiopathic ataxias and MSA. In response to requests for information on what to expect as ataxia pro- gresses, Dr. Susan Perlman, NAF’s Medical Inside This Issue Director, will address that important subject. • Highlights and photos from International Another often requested topic will be included Ataxia Awareness Day start on page 3 in this meeting’s agenda: suggestions on how to • Annual Membership Meeting information select a mobility device. and registration forms begins on page 19 During the 2013 annual meeting in Detroit, • Humor and personal stories are on meeting attendees were invited to participate in pages 14-17, 38-39 and 41-42 research studies administered by ataxia investiga- • Part two of Four Components of Physical tors from Harvard. The results of their research Therapy begins on page 36 will be presented at this meeting, along with • Get step-by-step instructions for enrolling highlights of the 2014 Ataxia Investigators Meet- in the Ataxia Patient Registry on page 51 Continued on page 3 Gen_1304_01-12_Layout 1 12/11/13 3:36 PM Page 2 Page 2 Generations Winter 2013-14 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 Phone: (763) 553-0020 Mike Parent ..................................... Executive Director FAX: (763) 553-0167 Lori Shogren...................... Special Projects Coordinator Internet: www.ataxia.org Design, Production and Printing ............... Leader Printing E-mail: [email protected] Generations is published by the National Ataxia Foundation, Inc., Minneapolis, MN. Copyright 2013 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 Membership Meeting (AMM) Membership Topics Agenda and Overview .................................. 19 Want to Go Green? ...................................... 13 Travel Grant Program Support ...................... 24 E-mail Blasts .............................................. 13 Registration Instructions .............................. 25 From the Desk of the Executive Director ....... 18 “Birds of a Feather” FAQ and Neuro Film Festival ...................................... 18 Registration Instructions ........................ 26 -27 NAF Merchandise ........................................ 40 The Cost of the AMM .................................. 27 Chapter and Support Group News ........... 43-46 Registration Forms ................................. 28-30 Vehicle Donation ......................................... 46 Registration Information NAF Directory of Chapters, Support and Las Vegas Resources ...................... 31-35 Groups and Ambassadors ....................... 47-51 Vegas Guidebook ........................................ 39 Matching Gifts ............................................ 51 Research Calendar of Events ................................. 52-54 Memorials and In Your Honor ....................... 55 Brain Tissue Donation ................................. 13 Personal Stories & Poems There’s Still Time to Donate ......................... 14 Friedreich Ataxia Study ................................ 15 Steel Wheels ......................................... 14-15 SCA Study in Minneapolis ............................ 24 Hasan Banks – Moving Forward .............. 16-17 Enroll in the Ataxia Patient Registry Today ..... 51 Still Active in Retirement .............................. 17 SCA Study in Boston ................................... 54 Nightly Trips to the Bathroom ....................... 38 Articles Where There’s a Will, There’s a Way .............. 39 An Adventure ......................................... 41-42 Recognitions of International Share Your Story ......................................... 42 Ataxia Awareness Day ................................... 3 Four Components to an Effective Physical Therapy Program for Ataxia ........ 36-38 The deadline for the Spring issue of Generations is Friday, March 7, 2014. Gen_1304_01-12_Layout 1 12/11/13 3:36 PM Page 3 Winter 2013-14 Generations Page 3 Annual Membership Meeting be available for viewing. Scientists will be present Continued from page 1 at their posters to answer questions about their ataxia research projects. All forms of ataxia will ing. Many other sessions will be presented by be represented at this poster session. If you are world-leading ataxia experts at the 2014 Annual interested in attending this special event, be sure Membership Meeting. to schedule your travel plans to arrive in Las Registered attendees at this annual meeting Vegas by early afternoon on Thursday. will have a special opportunity to meet leading The Annual Membership Meeting Planning ataxia investigators at a scientific poster session Committee is excited about the quality of speak- dedicated for patients and families. On Thurs- ers who will be presenting at the 2014 annual day, March 20 from 5:15-6:15 p.m., posters will meeting. v Recognitions of International Ataxia Awareness Day — September 25, 2013 — The National Ataxia Foundation would like to www.ataxia.org/walk/virtual. Top participants this thank all the individuals, support groups, and year were Sunny (Sunaro) Prom (www.sunny chapters who celebrated International Ataxia prom.com/sca3/), Carrie Henrichsen, and Michael Awareness Day (IAAD) through various events, Cammer, John and Chris Rakshys of the Central proclamations, resolutions, and press releases PA Ataxia Support Group. throughout the United States, Canada and India. Alabama Ataxia Support Group Individuals raised awareness about ataxia and Submitted by Becky Donnelly the activities raised more than $200,000 to help Our group participated in the NAF Virtual support the important work of the National Walk n’ Roll in support of IAAD. Many thanks Ataxia Foundation. to Alan English for spearheading this activity for Thank you to all who have organized and our group. participated in an IAAD activity. Through International Ataxia Awareness Day, we honor Denver Third Annual Run, Walk n’ Roll those who are affected by ataxia, those who we Submitted by Charlotte DePew have lost, their families, friends and caregivers. The Third Annual Denver Run, Walk n’ Roll IAAD Recaps for Ataxia was held on Sunday, September 8 at Denver’s beautiful City Park, home to the Fourth Annual Virtual Walk n’ Roll Denver Zoo and the Museum of Natural Individuals and groups participated in the History and Science. The event was held in Fourth Annual Virtual Walk n’ Roll for honor of a long-time sufferer of ataxia, Jim Lehr ataxia. The Virtual Walk n’ Roll this year (1936-2012), whose family was present and gave raised $3,064 as of November 12, thanks to the teams and individuals that supported them. Continued on page 4 Gen_1304_01-12_Layout 1 12/11/13 3:36 PM Page 4 Page 4 Generations Winter 2013-14 International Ataxia Awareness Day Continued from page 3 a loving testimonial. The warm, sunny morning event was attended by over 230 participants and donations to date are $40,000. This amount is much more than our goal and we are so thankful for the generos- ity of those who gave. The event began with a yoga warm-up and a lovely rendition of the National Anthem sung by The Atlanta Third Annual Walk n’ Roll for a young lady discovered by a committee mem- Ataxia raised over $12,000. ber at a local high school musical. Along with the this year at Shorty Howell Park in Duluth, GA. walkers and rollers, we had about 15-20 runners, Our Walk n’ Roll continues to grow a little each one of which was an eight-year-old boy who year. This year we had approximately 100 partic- completed the 5K! ipants and seven teams. Our teams are