PA-TSA Newsletter

VOLUME 36, ISSUE 2

The PA Tourette Syndrome Alliance is a non-profit organization that promotes awareness and acceptance, provides education, and assists families, schools and communities while advocating for individuals with TS.

Day at the Capitol to secure our grant!

Raised over $5,000 TS Family Camp Highmark Walk for a Healthy Community

Raised almost $13,000!

Educators Trainings: Peer Trainings: New Story School, Indiana Pittsburgh Montessori, Pittsburgh (2) Shikellemy SD, Sunbury Southwestern SD, Hanover Perkiomen Valley SD, Collegeville West Jefferson Hills SD, Pittsburgh Williamsport Area SD, Williamsport Hampton Township SD, Allison Park St. Teresa of Calcutta, Schwenksville Hilltop Prep, Rosemoyne Medical Related Trainings: Pathway School, Eagleville Clarion County Nurse Association, Clarion

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PA Tourette Syndrome Alliance, Inc. Volunteer Programs: P.O. Box 148 McSherrystown, PA 17344 Phone: 1-800-990-3300 We need you! Anyone can join our volunteer programs at any time. Recorded or 717-337-1134 trainings are available for most positions. To start the process, just let us know what www.patsainc.org program you might be interested in by emailing [email protected] or by completing a volunteer application online. STAFF  Committee Member — Volunteer your time to help a committee provide guidance Administrator/Consultant: and work to assist PA-TSA. Public Relations, Fundraising, Legislative and Strategic Sherrie Sponseller Planning are all looking for more members. Outreach & Volunteer Admnistrator:  Volunteer consultant — trained volunteers who can assist with disability Sara Woolf advocacy at school meetings.

Western PA Consultant  Speaker’s Bureau — trained volunteers who can provide trainings for educators, Rachel Lewis peers and other community members.  Youth Advocate Program — youth ages 12-25 who have trained and have Eastern PA Consultant materials to do an information board, bulletin board and give a basic training on TS. Nicole Wesner  Support Group Leader — start a local support group in your area.

Speakers Bureau Volunteer YAP Consultants Ilene Applebaum V Philadelphia & Montgomery Youth Advocate Program Aimee Denton O Madelyn Bender Bucks & Montgomery YAP Director Bucks Jay Geyer Kelly DiGiacomo L Janet Curren Pittsburgh YAP Committee Chester & Delaware Adam Fishbein U Jay Geyer Lesley Geyer Lindsay Glass Southern PA Pocono Region Magnus Lewis N Lesley Geyer Lori Harvey YAP Members Berks, Chester, Montgomery & Allegheny, Armstrong, Fayette T Pocono Region Greene, Indiana, Washington, & Xandra Corso Westmoreland Sydney Esquivel Patty John Washington, Butler & Beaver Christina MacLean E Kristen Harvey Dauphin & York Kylie Horton Susan Lutz E Martin Hurston Berks & Schuylkill Cheryl Malloy Rebecca Kramer Cambria & surrounding counties TJ LePera Christina MacLean R Magnus Lewis Dauphin & York Jana Schoch Aries Noel York S Susanna Roode Cheryl Malloy Cambria & surrounding counties And other members who did not Karen Wilder Barbara Rushak Chester, Delaware & Montgomery choose to be publicly listed. Allegheny, Washington, & Disclaimer Western PA This newsletter is published two times a year. Opinions expressed in this publication reflect the Azlen Theobald Bucks, Delaware, Montgomery & views of its editor and contributors. They are not necessarily the views of the PA Tourette Syndrome Alliance (PA-TSA). Philadelphia

While we will attempt to respond to all mail, we are not able to answer medical questions. Michelle Ulishney Cumberland, Dauphin, Lancaster The PA-TSA, Inc. does not endorse products, services, or manufacturers. Such names appear only as & York information for our members. PA-TSA assumes no liability whatsoever for information about the

use of any product or service mentioned. Karen Wilder Chester, Delaware & Montgomery Support group leaders and individual volunteers who have agreed to accept telephone calls concerning Tourette Syndrome are knowledgeable about TS. However, their comments reflect their Elena Wiseley personal background with TS and do not necessarily reflect the views of the PA Tourette Syndrome Delaware County Alliance. P A G E 3

Thank you to our T-Shirt Sponsors: West Manheim Lions Fraternal Order of Club Hanover Eagles #1299

Fraternal Order of Red Lion Eagles #2226 VFW Ashland #7654

Grants & Scholarships Raised or provided by: TAA of Eastern PA Community Aid, Inc Highmark Walk for a Healthy Community Teams Kenny’s Dream Foundation

Silent Auction Sponsors Philadelphia Art Museum Phoenix Theatres Philadelphia’s Magic Gardens Pride of Susquehanna Keystone Mountain Lakes Lehigh Valley Iron Pigs Water Golf on City Island James Danner VFW #537 Filson Water Old Jail Museum (In Honor of MacLean Family) Andy Warhol Museum Fun Fore All Oasis Family Fun Center Karns Foods Living Treasures Animal Park Harrisburg Senators John Heinz History Center Eat-N-Park (Corporate) Nancy Miller American Helicopter Museum The Children’s Museum (In Honor of MacLean Family) Stampin’ Up Carnegie Science Center Skip Lontz Cherry Crest Adventure Farm Gateway Clipper Fleet (In Honor of MacLean Family) AACA Museum Pittsburgh Botanic Gardens Philadelphia Soul Herr’s Snacks The Scarehouse Carlisle Sports Emporium Sturgis Pretzel Bakery Adventure Sports in Hershey Ozzy’s Family Fun Center PA Renaissance Faire Go N’ Bananas Split Rock Resort Gettysburg Heritage Center QVC Studio Tour Ollies Bargain Outlet State Museum of PA Kreider Farms Tour MacLean Family Allentown Art Museum Turkey Hill Experience Lahey Family Fun Park Pittsburgh Steelers Boiling Springs Pool Donald & Susan Volk Allegro Winery Explore and More Museum Ozzie Greene, D&O Lawncare Philadelphia Flyers Hickory Falls Entertainment Center (In Honor of MacLean Family) Dorney Park & Wildwater Kingdom Chanticleer Foundation Climb North @ Jewart’s Gymnastics Putt U Miniature Golf Penn Museum Giant Food Stores Little League Museum Philadelphia Rock Gym Blackbird Distillery Oriental Trading Reading Public Museum Monkey Joe’s Wegmans National Toy Train Museum Sophie’s Adventure Sports National Aviary Chloe Eichelberger Pittsburgh Zoo & PPG Aquarium Lake Tobias Dallastown American Legion Altoona Curve Utz’s Chips (In Honor of Rehmeyer Family) Wildwood Highlands Kings Island Order of Eagles #1299 Shari Dissen Strasburg Railroad Order of Eagles #1801 Patty John Reading Fightin’ Phils Order of Eagles #2226 Crayola Experience York Revolution Greenville Moose Center Longwood Gardens Washington Wild Things Hanover Auto Team Lilly Castillo Harrisburg City Islanders Home Association of McSherrystown (Chartiers Valley Middle School) Oakmont Bakery New Oxford Social Club Philadelphia Eagles Delgrosso’s Amusement Park VFW Ashland #7654 Faye Esquivel County Theatre (Doylestown) West Manheim Lions Club RB Services VOLUME 36, ISSUE 2 P A G E 4

of PA-TSA moving forward, helped at 5. Does this event benefit the children with Q & A with Volunteer: camps, and have taken my whole family to TS? Harrisburg to meet our representatives and Yes, it is an event that is great for the kids to Aimee Denton senators to share with them what PA-TSA learn to be advocates for themselves and provides to our families, our schools, our every person who takes the time to 1. How long have you work places and many organizations. participate is needed and valuable in making been volunteering for Tourette Syndrome a represented PA-TSA? 4. What do you feel is the most important disorder. Every time we are at the Capital I have been PA-TSA event & why should someone Senators and Representatives always volunteering for PA- volunteer? comment on how we need a bigger showing TSA for about 7 yrs. Because PA-TSA truly works on a to get better funding. It is something most of shoestring budget making the most of every us can do. 2. What inspired you dollar, I feel that Day at the Capital is the to volunteer for PA-TSA? most important event. They absolutely need 6. How did you prepare for this event? My son, Jude was diagnosed at age 5 and is the limited funding that the government PA-TSA provides a little prep lesson just so now 15. When he was diagnosed I had no allocates to them each year to stay on their participants know what to expect and then real knowledge or understanding of Tourette feet. This amount can change from year to you are put in groups with people who know Syndrome and the associated disorders. year and is usually put up to be cut entirely the process and lead the group and When I reached out to PA-TSA they each year. As families that have children or conversation all you have to do is be immediately walked me through everything other family members with T.S. it is our there. It is one day everybody really matters and accompanied me to every school obligation and responsibility to advocate for and can make a difference for those affected meeting. They introduced me to so many Tourette Syndrome. As many of us know we by Tourette Syndrome in the state of great families and have been with us the last are all affected by Tourette Syndrome when Pennsylvania. 10 years. I was never alone or felt alone it is in our homes in our schools and other dealing with T.S once PA-TSA stepped in. I community spaces. It is not something we 7. Any last thoughts? am always grateful to be able to volunteer can assume our government leaders PA-TSA is an organization I am forever and help out for an organization that I understand or have experience with. Going grateful for and cannot imagine what T.S. believe is truly indispensable to the people to Harrisburg with PA-TSA for Day at the would have been for my family without they serve. Capital is our opportunity to let our them and all of the members. I know that government know and understand T.S. and we are stronger together and I hope that 3. In what capacity do you volunteer? why we as families need support but also many more people will get involved. Thank I have been taught by PA-TSA to advocate our schools and teachers need PA-TSA to you PA-TSA for giving us these for my own child and have been able to go step in for our children and provide opportunities. into schools as a PA-TSA volunteer and educational in-services for our teachers and serve as educational advocate for other students. children, I have participated in discussions

Support Groups: We have local support groups in several areas of the Commonwealth, along with an online support group that is available 24/7! If you are interested in starting a support group in your area, please contact our Outreach & Volunteer Coordinator – Sara Woolf at [email protected].

Pen Pals: Contact the office (1-800-990-3300 or [email protected]) to be added to our Pen Pals list! We can then run you a list of others within 2 - 3 years of your age who you can contact for support!

To connect with these programs or to request the support of a Consultant, visit our website at www. PATSAInc.org and click on Programs/Services for Individuals & Families. P A G E 5

Genetic Research is moving forward! We would like to pass along important research information that we received from New Jersey. Recently, the genetics of Tourette Disorder article was published in the journal Neuron. The journal also highlighted this important research on the cover! FYI: Neuron is one of the premier neuroscience journals. Many PA Tourette Syndrome Alliance members and camp attendees donated samples that were used in this research! Rutgers would like to thank all of those who participated. Together, we are moving the field forward!! Here is a link to the article. http://www.cell.com/neuron/fulltext/S0896-6273(17)30350-1 The article is a bit technical, so here is a press release from Rutgers that may help us better understand the results of the research. http://news.rutgers.edu/research-news/damaged-genes-considered-high- risk-developing-tourette-syndrome-identified/20170501#.WQo4pty1t9N

Best wishes and thank you!! Gary A. Heiman, PhD Rutgers University Department of Genetics Piscataway, NJ

PA-TSA would like to thank Dr. Heiman for sharing this important research with us!

Donations In Loving Memory:

Barbara Newlin Mike Wood

By Betty Peaslee By Kathy Laws

Donations In Honor: Jack Chambers Sherrie Sponseller By Thrivent Financial By Adam Fishbein

Lydia Savage York Township Elem. By Dolores & Lydia Savage By Maria Noel VOLUME 36, ISSUE 2 P A G E 6 Our Impact 2016-2017

Did you know that during the last school year PA-TSA trained 1324 people through:

21 Educator Trainings 13 Peer Trainings 2 Healthcare Trainings

Attended 35 IEP and 504 Plan Meetings to impact 190 school staff

Provided Consultant Services to help 3 schools meet the needs of their students with TS

Responded to 513 calls/emails for support and information

Sent out 4724 letters/information and 12,714 Newsletters

Participated in 36 Awareness Events such as Health Fairs, Disability Fairs and Community Events

Promoted “Wear Blue” for TS in 45 communities

And Hosted 202 people at TS Family Camp and Retreat!

These numbers are good, but they don’t measure our impact!

How do you adequately measure the change when a teacher accommodates a child with TS, instead of disci- plining them? How a peer accepts a student with TS when they might have teased or mimicked him. How a family finds support instead of ridicule? Our impact is so much more than numbers...

Yes, I would like to support the work of the PA Tourette Syndrome Alliance

Name: ______

Address: ______

______

Phone: ______Email: ______

Please accept the following donation:

Choose your favorite program to support! ____ $5 ____$10 ____ $25 ____ $50 ____$100 ____ Other ___ Overall Support

___Trainings ___My contribution is enclosed OR ___ Please bill my credit card ___Information/Referral ___ Advocacy/Consultant Services ___ Mastercard ___ Visa ___ Discover ___ American Express ___ Public Awareness ___ Newsletters # ______Exp. Date: ______CVV# ______

___ TS Family Camp and Retreat Cardholder Signature: ______

Donate online at www.patsainc.org or by sending All contributions are tax-deductible in accordance with IRS Section 501 (c)(3). The official registration and financial information for the PA-TSA, Inc may be obtained from this response card to: PA-TSA, P.O. Box 148, the PA Department of State by calling toll-free within PA 1-800-732-0999. McSherrystown, PA 17344 Registration does not imply endorsement. P A G E 7

TS Family Retreat (Camp Eder) Sept 30-Oct 1

Pitt Football vs NC State (Pittsburgh) October 14

Wear Blue for TS (statewide) October 16-20

Pumpkin Run 5K and One Mile (Oaks) October 28

To find out more about upcoming events make sure you are on our email list by registering for free!

Meet our new Consultants!

Western PA Eastern PA

The Consultant for the The Consultant for the Eastern Western portion of the portion of the state is Nicole state is Rachel Lewis. Wesner. Nicole currently Rachel currently resides resides in Kunkletown which is in Belle Vernon (near in Monroe county in the North Pittsburgh) with eastern corner of PA. She lives her husband Matt and with her husband, son and 2 their teen son dogs. She is the parent of a diagnosed with TS. child with TS who is 8 years old. She has been involved She has attended the Day at the with PA-TSA for many years as a Speaker, Capitol, TS Family Retreat and Volunteer Consultant, Support Group Leader and TS Family Camp. Nicole has Board Member, and has led or been a part of been advocating for her son since he was diagnosed many events including the Highmark Walk, with TS and from that came a passion she didn't know Pirates Game, TS Clinic and has served as Camp she had. She is confident that she can advocate for Committee chair. As part of our Board, she had others as if they were her own child. Educating and to step aside from that role in order to become a spreading TS awareness is extremely important to her staff member. This was a hard decision for because she lives it each and every day and she Rachel, but she is ready to assist PA-TSA in this understands what it is like to fight for something that a new position, working even more directly with lot of others may misunderstand. Nicole is very excited families in the Western portion to be a part of PA-TSA, and is of the state. Her phone looking forward to jumping into her extension is #4 and her email is new role. Her phone extension is [email protected]. (Anyone #3 and you can also reach her at who was contacting Rachel as a [email protected]. Volunteer Consultant can now use this new email address.) See how we divided the State!

VOLUME 36, ISSUE 2

PA -TSA Board of Directors

President Christina MacLean Procedure Writer York County Vice-President Jay Geyer Department of the Navy Virginia Secretary Melinda Platt Inventory Specialist Adams County Treasurer Chris Tomlinson Sr. Director of Radiology Bucks County

Members Dr. Leo Burke, Psy.D. Psychologist Philadelphia Dr. Ray Christner Psychologist Acknowledgement of Thanks Adams & York County Monthly Donors Jeanine Davis Ilene Applebaum Brenda Barrick Account & Marketing Manager Dorothy Bollinger Peggy Ann Cox Bucks County Adam Fishbein Jeff George Stephanie Dissen Jay Geyer Lesley Geyer Admin/Accounts Receivable Allegheny County BENEFACTORS & FUNDRAISERS over $250 Adam Fishbein Amcom Office Systems B.P.O.E. Berwick Elks # 1138 College Student Montgomery County Carnegie-Collier Rotary Club Danville Moose Lodge Lesley Geyer Nancy Dore Community Health Charities Occupational Therapist Patty John Stroudsburg Eye Specialists Luzerne County TVC Management Corp Lindsay Glass Student GRANTS Lehigh County Brad Cohen Tourette Foundation Lori Grimes-Harvey Community Aid, Inc. Human Services Director Robert & Joan Dircks Foundation Fayette County Patty John Your generosity is greatly appreciated! VP/Financial Advisor Allegheny County (If we have missed anyone, please contact PA-TSA and your name will be mentioned in our next newsletter.) Jeffrey Mason Recruiter Lawrence W. Brown, M.D. Allegheny County Associate Professor of Neurology Philadelphia New Directors will be Medical Advisors: Peter Meyer, M.D. elected soon! Pediatric Neuro Psychiatrist Montgomery County