View Newsletter in New Window - PA Tourette Syndrome Alliance
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View Newsletter in New Window - PA Tourette Syndrome Alliance
PA-TSA Newsletter V O L U M E 3 4 , I S S U E 1 14 0 -8, 2 6 e n Ju Octo ber 1 2-13 ,2 014 P AGE 2 PA Tourette Syndrome Alliance, Inc. P.O. Box 148 McSherrystown, PA 17344 Phone: 1-800-990-3300 or 717-337-1134 Fax: 717-698-1420 www.patsainc.org STAFF Administrator/Consultant: Sherrie Sponseller Assistant Administrator/Consultant: Sabrina Bosse Volunteer Programs: We Need You! Anyone can join our volunteer programs at any time. Recorded trainings are available for most trainings and updates will be completed each summer. To start the process, just let us know what program you are interested in by emailing saraw@patsainc.org or by completing a Volunteer Application online. Volunteer Consultant — trained volunteers who can assist with IEP and other school meetings. Speaker’s Bureau — trained volunteers who can provide trainings for Educators, Peers and other Community Members. Youth Advocate Program — youth ages 12-25 who have trained and have materials to do an information board, bulletin board and give a basic training on TS. Outreach/Information Program — knowledgeable volunteers who “staff” an information booth at local events. Outreach & Volunteer Coordinator: Sara Woolf Speakers Bureau Ilene Applebaum Educator/business owner Philadelphia & Montgomery Jack Chambers Retired Banker Adams & York YAP Volunteer Consultant Aimee Denton Demee Bakery Owner & Operator Bucks & Montgomery Lesley Geyer Occupational Therapist Berks, Chester, Delaware & Montgomery Janet Curren Homemaker Chester & Delaware Rachel Lewis Jay Geyer Cheryl Malloy Dept. of Navy Southern PA Therapeutic Support Staff Cambria & surrounding counties Lesley Geyer Karen Wilder Occupational Therapist Berks, Chester, Montgomery & Pocono Region Rachel Lewis Customer Service Allegheny, Fayette, Washington, & Westmoreland Susan Lutz Dental Hygienist Berks & Schuylkill Cheryl Malloy Therapeutic Support Staff Cambria & surrounding counties Barbara Rushak Retired Educator Allegheny, Washington, & western pa Karen Wilder Counseling/Human Relations Chester, Delaware & Montgomery Customer Service Allegheny, Fayette, Washington, & Westmoreland Counseling/Human Relations Chester, Delaware & Montgomery V O L U N T E E R S Youth Advocate Program YAP Director Jay Geyer YAP Committee Lindsay Glass Izaiah Bosse York & Adams Xandra Corso Warren, McKean & Elk Sydney Esquivel Adams & York Kristen Harvey Fayette Kylie Horton Blair Martin Hurston Lancaster Rebecca Kramer Centre/ Central PA TJ LePera Montgomery Magnus Lewis Westmoreland/Western PA Susanna Roode Montgomery & Bucks And other members not listed Disclaimer This newsletter is published two times a year. Opinions expressed in this publication reflect the views of its editor and contributors. They are not necessarily the views of the PA Tourette Syndrome Alliance (PA-TSA). While we will attempt to respond to all mail, we are not able to answer medical questions. The PA-TSA, Inc. does not endorse products, services or manufacturers. Such names appear only as information for our members. PA-TSA assumes no liability whatsoever for information about the use of any product or service mentioned. 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 personal background with TS and do not necessarily reflect the views of the PA Tourette Syndrome Alliance. P AGE 3 Held the weekend of June 6-8, 2014! Thanks to the following sponsors: Highmark Walk teams & walkers West Manheim Twp Lions Club Fraternal Order of Eagles *Littlestown Aerie 2226 *Hanover Aerie 1406 *Carlisle Aerie 1299 Lowther Manor Lodge No. 781 Valley Grange #1360 Thomas Walter Christine Loveland Quinn Flags Thomas R Hummel Susan Millheim Mr & Mrs Eugene R Cathcart Steve & Jeri Ritchey Sarah & Tim Barshinger Andy Conrad Shirley McMonagle Mickel D & Mary Ann Campbell Phyllis Sisco John Denora Scott Himmelberger Ilene Applebaum Clara Zalakar Allen E & Carol A Eustace Alan & Rebecca Fralin Thank You for supporting our Camp Programs! To support the 2015 Camp or to donate scholarship funds, contact sabrina@patsainc.org Held the weekend of October 12-13, 2014! Thanks to the following sponsors: Carnegie-Collier Rotary VFW Post 7530 Lowther Manor Masonic Lodge Rock It Pizza, Etters, PA Fraternal Order of Eagles #2399 Monessen Elks Lodge #773 Thank You ! This amazing event would not be possible without our sponsors! Snack donors: Patricia John, Associate Vice President & Financial Advisor Utz Quality Foods Martins Karns Food Got a great picture of someone with Tourette Syndrome? Want to help spread awareness and show that people with TS are fun, active and fantastic? Send in your picture to add to our “Faces of Tourette” awareness video! To support the 2015 Retreat or to donate scholarship funds, contact sabrina@patsainc.org Cut out and send this information along with your picture to PATSA at P.O. Box 148, McSherrystown, PA 17344 or by email to sherrie@patsainc.org. Name(s): _______________________________________ County: ________________________________________ (By submitting this photo, I agree that I have full rights to the photo We use the video on our Facebook page, and grant PA-TSA full permission to use the photo in their “Faces YouTube channel and to show Local Legislators of Tourette” awareness video.) that people with TS are just like everyone else!! Signed: ___________________________________________ V OLUME 34, ISSUE 1 What’s that Acronym? Here is a list of handy acronyms that may just help you as you read that Individualized Education Program (IEP), talk with your child’s teachers or research information to help your child succeed! ABA ADA ADR ADD/AD/HD AHEAD AP AP; APD AS ASD AT BIP; BMP CAP; CAPD CAST CBA CEC CFR CHADD COPAA CST DCD DD EBD ELC ES ESY ETS FAPE FERPA FSP GATE GE GED G/IEP GPA GT/LD IDD IDEA IEE IEP IEPT ITP IQ K-12 LEA Applied Behavior Analysis Americans with Disabilities Act Alternative Dispute Resolution Attention-Deficit Disorder/ AttentionDeficit/Hyperactivity Disorder Association on Higher Education and Disabilities Advanced Placement Auditory Processing Disorder Asperger's Syndrome Autism Spectrum Disorder Assistive Technology Behavior Intervention Plan; Behavior Management Plan Central Auditory Processing Disorder Center for Applied Special Technology Curriculum-Based Assessment Council for Exceptional Children Code of Federal Regulations Children and Adults with AttentionDeficit/Hyperactivity Disorder The Council of Parent Attorneys and Advocates Child Study Team Developmental Coordination Disorder Developmentally Disabled; Develop mentally Delayed Emotional and Behavioral Disorders Education Law Center Emotional Support Classroom Extended School Year Services Educational Testing Service Free Appropriate Public Education Family Educational Rights and Privacy Act Family Support Plan Gifted and Talented Education General Education General Education Diploma Gifted Individualized Educational Plan Grade Point Average Gifted & Talented with Learning Disabilities Intellectual/Developmental Disability Individuals with Disabilities Education Act Independent Educational Evaluation Individualized Education Program Individualized Education Program Team Individual Transition Plan Intelligence Quotient Kindergarten through 12th Grade Local Education Agency P AGE LD LDA LRE LS LSS MBD MDT MH NCLB NCLD NICHCY NICHD NILD NIMH NLD;NVLD OCD OCR ODD OHI OSEP OT PAC PACER PDD PEAL PSAT PT RSP SAT SD SI SLD SLP SMT SP/Lang, SP/LG SPED SSI SST V/V WIAT WISC; III or IV WJ; III or 4 4 Learning Disability Learning Disability Association Least Restrictive Environment Learning Support Classroom Life Skills Support Classroom Minimal Brain Dysfunction Multidisciplinary Team Multiply Handicapped No Child Left Behind Act of 2001 National Center for Learning Disabilities National Dissemination Center for Children with Disabilities National Institute for Child Health and Human Development National Institute for Learning Disabilities National Institutes of Mental Health Nonverbal Learning Disability Obsessive-Compulsive Disorder Office for Civil Rights Oppositional Defiant Disorder Other Health Impaired Office of Special Education Programs Occupational Therapist; Occupational Therapy Parent Advisory Committee Parent Advocacy Coalition for Educational Rights Pervasive Developmental Disorder Parent Education and Learning Preliminary Scholastic Aptitude Test Physical Therapist; Physical Therapy Resource Specialist Program Scholastic Aptitude Test School District Sensory Integration Specific Learning Disability Speech and Language Program Simultaneous Multisensory Teaching Speech and Language Special Education Supplemental Security Income Student Study Team Verbalization/Visualization Wechsler Individual Achievement Test Wechsler Intelligence Scale for Children Woodcock Johnson Psychoeducational Battery Remember — if your school mentions an acronym that you are not familiar with — just ask!! Every job has it’s own jargon that not everyone understands! P AGE 5 The following school districts and communities have received FREE trainings on Tourette Syndrome from PA-TSA July 1– December 31, 2014! Educators In-Service Trainings: Tulpehocken Area SD, Berks County Gateway SD, Allegheny County Lititz Mennonite, Lancaster County Upper Merion SD, Montgomery County Cumberland Schools, Cumberland County Spectrum Charter School, Allegheny Co. Frazier SD, Fayette County Souderton Area SD, Montgomery County Pine Grove SD, Schulkill County Sunrise School, Allegheny County Pocono Mountain SD, Monroe County (2) West Chester SD, Chester County Owen J. Roberts SD, Montgomery County Lewisburg SD, Union County Chartiers Valley SD, Allegheny County Peer In-Service Trainings: Centennial SD, Bucks County (2) Owen J. Roberts SD, Montgomery County Saucon Valley SD, Northampton County Dallastown SD, York County (2) Bethlehem Center SD, Washington County Shippensburg Area SD, Franklin County Medical Related Trainings: York College Nurses, York County Central Region School Nurses, Clinton County Northeast Region School Nurses, Lackawanna Co. True North Behavioral Health, York/Adams Counties Community Training: Charties-Carnegie Rotary, Allegheny County 2015 Marks PA-TSA’s 30th Anniversary! To nominate someone, fill out the nomination form below and mail it to PA-TSA, P.O. Box 148, McSherrystown, PA 17344, Attn: Sara Woolf. Our Public Relations and Camp Committee Members are busy planning a 30th Anniversary Banquet for the Or, go to www.patsainc.org to fill out the confidential first evening of TS Family Camp. This banquet will online survey and read a full description of each be held Friday, June 12 and we need your help in award. nominating people to receive our awards! On our 25th Anniversary, we established several awards that were named in honor of several important historical members of our organization. These five-year awards are: Mary Lou Reaver Advocate Award Sid Newman Fundraiser Award Dr. Cadman Donor Award Dr. Peter Meyer Professional Award Senator Terry Punt Legislative Award Accommodating School Award Outstanding Volunteer Award Nominations will be accepted until April 12, 2015. If your nominee is selected, we will be in touch with you for follow-up and for more information. --------------------------------------I nominate for the following award: My contact information is: Name: Phone: Email: V OLUME 34, ISSUE 1 P AGE Donations In Loving Memory: Jeanette Boguslaw Thomas Daley Joseph Levstek Mary Ann Lepera April D'Orazio Carole Trebich Kathleen Winters Maryann Lindsay Mr. & Mrs. Louis Alba George & Jane Doan Angela Lepera Tube Methods C/O Matt Mankus Lesley & John Geyer Hilda Daniel, PC Carol Rohl Susan Millheim Brad Michel Joseph & Juanita Zumack Ryan Nocero Joanne Franzoni Mr. & Mrs John Muntz Peter & Adriane De Moerloose Helen Strony Lou Pilch Donations In Honor: Austin & Mitch Scott Muir Jay Geyer Jack & Lesley Geyer Jeff Kiely CC & SP Cherok Jude Denton Kellyann Rogers Meressa Hooper Lisa, Richard & David LearnerWagner My Life, My Story, My Tourette's! Peter Giunta Nicholas Dellorso Edward J & Diana M Dellorso Rob Sukaly Michelle Stranix Steven Hill Thomas Walter The Lewis Family Teresa Yancik The Wilder Family Stephen Blumenthal William Turk Clara Zalakar 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 saraw@patsainc.org. Pen Pals: Contact the office (1-800-990-3300 or info@patsainc.org) 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. 6 P AGE 7 PA-TSA has replaced Yearly Membership with a Lifetime Membership option!! Join for the low price of $100 and one family member (over the age of 18) will enjoy membership for their lifetime!! This includes: newsletters, consultation, information & referral, 10% discount on TS Family Camp & Retreat, privilege of voting for Board Members and a plastic Membership Card!! Parents, get your name on the Membership Card so your family can access all of our supports while your child is young and then give them the gift of Lifetime Membership when they turn 18!! 5K and 1-Mile Fun Run Held November 1, 2014, raised over $5,000! Get your card NOW! Davis Family—for Luke Van Ruler Family—for Tristan Sheri Newmark Christa Barfield—for Micah Heidi Ruprecht—for Megan Chester County Running Store Positive Paws Pet Service, LLC Gavin Doyle The Millheim’s Lesley Geyer Doyle Family from Stephanie DerOhannessian May 6 -- TS Awareness Day at the Capitol May 15- June 15 -- TS Awareness Month May 16 -- Highmark Walk for a Healthy Community in Harrisburg and Pittsburgh (Registration starts 2/2) June 12 -- PA-TSA's 30th Anniversary Banquet June 12-14 -- TS Family Camp (Registration starts 2/27) V OLUME 34, ISSUE 1 Board of Directors President Melinda Platt Inventory Specialist Adams County Vice-President Lesley Geyer Occupational Therapist Luzerne County Secretary Jay Geyer Department of the Navy Virginia Treasurer OPEN Members Dr. Leo Burke, Psy.D. Psychologist Philadelphia Jeanine Davis Account & Marketing Manager Bucks County Joyce Eisenhauer Homemaker Cumberland County Lindsay Glass Student Lehigh County Lori Grimes-Harvey Human Services Director Fayette County Rachel Lewis Customer Service Coordinator Westmoreland County Christina MacLean Procedure Writer York County Medical Advisory Board Lawrence W. Brown, M.D. Associate Professor of Neurology Philadelphia Peter Meyer, M.D. Pediatric Neuro Psychiatrist Montgomery County Acknowledgement of Thanks PERSONAL AND CORPORATE BENEFACTORS over $200 F.O.F. Golf Association c/o Kathy Payette Jeffrey C & Nancy C Dore Jay Geyer John & Lesley Geyer Becky Nuttall Linda Pera James & Mary Lou Reaver Donald F & Susan Volk GRANTS Brad Cohen Tourette Foundation Community Aid, Inc. PA Department of Health CLUBS & LODGES Fraternal Order of Eagles 2226 Lowther Manor Lodge No. 781 Fraternal Order of Eagles Hanover Aerie 1406 VFW Home Association Post 15 Carnegie-Collier Rotary Club Fraternal Order of Eagles 2226 Wellsboro Moose- Lodge #1147 Your generosity is greatly appreciated! (If we have missed anyone, please contact PA-TSA and your name will be mentioned in our next newsletter.) This Newsletter was made possible through a grant provided by: Mission Statement 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.