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 P A G E 2 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.