PA-TSA Newsletter
Total Page：16
File Type：pdf, Size：1020Kb
PA-TSA Newsletter VOLUME 35, ISSUE 1 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. Brain Chemical Aids Tic Control in Tourette Syndrome, Say Researchers 01 Oct 2015 some become PA 153/15 increasingly severe and resistant to treatment. A chemical in the brain Previously some could potentially be harnessed researchers have thought to help young people with that the successful control Tourette Syndrome (TS) to of tics comes about over overcome the physical and time through the vocal tics associated with the linked to the planning and selection of purposeful and continual effort to neurological disorder, say researchers. movements offers a more parsimonious suppress them. In a paper published in the journal Trends account for how tics might be controlled However, the Nottingham team — in Cognitive Sciences, academics from in Tourette syndrome. Namely that motor which also includes researchers from the The University of Nottingham reviewed excitability is reduced locally within Institute of Mental Health — believe it is recent evidence that the neurochemical brain motor areas through the operation more likely that tics improve as a result of known as Gamma Aminobutyric acid of GABA-mediated ‗tonic inhibition.‘ the changes in brain structure and (GABA) is responsible for dampening This finding needs to be further replicated function that occur during adolescence. down the hyperactivity that causes the but if it proves to be a robust finding it Specifically, they believe that this could repetitive and involuntary movements and may have important implications for largely be attributed to the neurochemical noises. therapies for neurodevelopmental GABA — the primary inhibitory They found that increases in the disorders.‖ transmitter found in the central nervous production of GABA as a result of system, which plays the principle role in changes in the brain during adolescence Uncontrollable tics controlling the ‗excitability‘ of neurons. may contribute to an improvement in TS is a neurological disorder affecting The brain‘s neural circuits are established symptoms for the majority of people with around one per cent for all school-age early during development, with TS and could offer a new avenue for children, who are affected by an evolving milestones including the creation and treatments that lead to targeted increases series of chronic physical and vocal tics migration of neurons, the formation of of the chemical in the areas of the brain which develop over time and become synapses — the pathways by which the that control motor function. increasingly worse. neurons carry their electrical signals — Professor Stephen Jackson, in the While children with TS can often and the strengthening of those synaptic University‘s School of Psychology, said: suppress their tics, it takes great effort connections. ―This is potentially a very important and can be both uncomfortable and finding. A widely held view has been that stressful and eventually builds up until Self-regulating techniques unwanted movements such as tics in the urge to tic becomes uncontrollable. These early developments produce Tourette syndrome are actively Tics are at their worst for people with TS brain networks with a balance of suppressed through the recruitment of aged between 11 and 14 years old, but for influences that will excite and inhibit the frontal brain areas involved in volitional the majority begin to improve throughout brain and a disruption to this natural order action and cognitive control. The finding adolescence and into early adulthood. For has been associated with a number of that individuals with Tourette syndrome a substantial minority though (around 20 common neurodevelopmental disorders exhibit increased GABA in brain areas to 30 per cent) the tics continue and for including TS. Continued on Page 7 P A G E 2 PA Tourette Syndrome Alliance, Inc. Volunteer Programs: P.O. Box 148 McSherrystown, PA 17344 We need you! Anyone can join our volunteer programs at any time. Recorded trainings are available for most positions and updates will be completed each summer. Phone: 1-800-990-3300 To start the process, just let us know what program you are interested in by emailing or 717-337-1134 [email protected] or by completing a volunteer application online. Fax: 717-698-1420 Volunteer consultant — trained volunteers who can assist with disability www.patsainc.org advocacy at school meetings. STAFF Speaker’s Bureau — trained volunteers who can provide trainings for educators, peers and other community members. Administrator/Consultant: Youth Advocate Program — youth ages 12-25 who have trained and have Sherrie Sponseller materials to do an information board, bulletin board and give a basic training on TS. Assistant Administrator/Consultant: Outreach/Information Program — knowledgeable volunteers who “staff” an Sabrina Bosse information booth at local events. Outreach & Volunteer Coordinator: Sara Woolf Speakers YAP Bureau Volunteer V Youth Advocate Program Consultants Ilene Applebaum YAP Director Educator/business owner O Jay Geyer Philadelphia & Montgomery YAP Committee Lindsay Glass Jack Chambers Aimee Denton L Izaiah Bosse Retired Banker Demee Bakery Owner & Operator York & Adams Adams & York Bucks & Montgomery U Xandra Corso Janet Curren Lesley Geyer Warren, McKean & Elk Homemaker Occupational Therapist N Sydney Esquivel Chester & Delaware Berks, Chester, Delaware & Adams & York Kristen Harvey Jay Geyer Montgomery Fayette Dept. of Navy Rachel Lewis T Kylie Horton Southern PA Customer Service Blair Allegheny, Fayette, Washington, & Lesley Geyer E Martin Hurston Westmoreland Occupational Therapist Lancaster Berks, Chester, Montgomery & Cheryl Malloy E Rebecca Kramer Pocono Region Therapeutic Support Staff Centre/ Central PA Cambria & surrounding counties Rachel Lewis TJ LePera R Montgomery Customer Service Karen Wilder Allegheny, Fayette, Washington, & Magnus Lewis Counseling/Human Relations S Westmoreland/Western PA Westmoreland Chester, Delaware & Montgomery Aries Noel Susan Lutz Adams & York Dental Hygienist Susanna Roode Berks & Schuylkill Montgomery & Bucks Cheryl Malloy Therapeutic Support Staff And other members not listed Cambria & surrounding counties Disclaimer Barbara Rushak This newsletter is published two times a year. Opinions expressed in this publication reflect the Retired Educator Allegheny, Washington, & Western PA views of its editor and contributors. They are not necessarily the views of the PA Tourette Syndrome Alliance (PA-TSA). Karen Wilder Counseling/Human Relations While we will attempt to respond to all mail, we are not able to answer medical questions. Chester, Delaware & Montgomery The PA-TSA, Inc. does not endorse products, services, or manufacturers. Such names appear only as Michelle Ulishney information for our members. PA-TSA assumes no liability whatsoever for information about the Certified School Nurse use of any product or service mentioned. Cumberland, Dauphin, Lancaster & York Support group leaders and individual volunteers who have agreed to accept telephone calls Patty John concerning Tourette Syndrome are knowledgeable about TS. However, their comments reflect their Vice President, Financial Advisor personal background with TS and do not necessarily reflect the views of the PA Tourette Syndrome Washington, Butler & Beaver Alliance. P A G E 3 Held the weekend of June 12-14, 2015! Fox-Eichelberger VFW Lowther Manor Lodge #781 Post #7415 Camp Hill, PA New Cumberland, PA York Revolution Mary Kay Children‘s Museum of Pittsburgh Philadelphia Eagles McCleaf‘s Orchard Shady Maple Smorgasbord Reading Fightin‘ Phillies Cherry Crest Adventure Farm Gettysburg Museum Martin‘s Foods AACA Museum John Heinz History Center Karns Foods Justin Bachman Panera Bread Philadelphia Zoo Dr. Ray Christner Erie Zoological Society Lehigh Valley Zoo Bath & Body Jimmy Stewart Museum Valley Grange Indian Caverns PA Trolley Museum WaWa Nationality Rooms & Marilyn‘s Creations Red Lobster Exchange of Pittsburgh MacLean Family Erie Otters Explore & More Children‘s RB Services, Aluminum Casting CVS Pharmacy Museum Longwood Gardens Giant Food Stores, Skyzone - Indoor Fun Fore All Gettysburg & Trampoline Park Pittsburgh Steelers Chambersburg PA Madelyn Bender Carol Neach Pymatuning Deer Park Oasis Family Fun Center In Memory of Patrick Gerrity Pittsburgh Zoo & American Helicopter Museum Pittsburgh Pirates PPG Aquarium Sentsy Philadelphia Flyers Lake Tobias Wildlife Park Longhorn Steak House Murphy‘s Jewelry Delgrosso‘s Amusement Park Living Treasures Animal Park Held the weekend of October 24-25, 2015! Brad Cohen Tourette Foundation Kenny’s Dream Foundation Lowther Manor Lodge No. 781 Fox Eichelberger VFW Post 7415 Family Practice Center; Dr. Cox Thank You for supporting our Camp Programs! To support the 2016 Camp/Retreat or to donate scholarship funds, Click Here VOLUME 35, ISSUE 1 P A G E 4 PA-TSA Supporters: Important Request As you probably know, the State of Pennsylvania is over 7 months into a budget stalemate, with no end in sight. Today the PA Tourette Syndrome Alliance is weathering the storm without our essential State grant of $150,000 from the PA Department of Health. So far PA-TSA has not had to borrow money or cut services because of our ongoing fundraising efforts and by utilizing a modest reserve of $75,000. However, that money will not last forever, and soon we will face