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Tourette Syndrome
Association of Greater Washington Monthly On-Line Newsletter | |||||
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October 2004 1. Wine Event October 29! 2. Important Message from Jeremy Scott 3. Support Group Information 4. Danya Peer Inservice Program 5. An Easy Way to Give: Payroll Deduction 6. Research Volunteers Wanted
1. Hot Ticket! TSAGW Wine Tasting Gala - Still Tickets Left You are invited to TSAGW’s Wine Tasting Gala next Friday, October 29, 2004 at the Embassy of Switzerland, from 7o’clock on. This is an event that you don’t want to miss! The gala is black tie optional. Participants can look forward to tasting wines from around the world while eating fondue, various cheeses, fruits, and pastries. Swiss chocolate is set to have a significant presence, as will a coffee bar from Starbucks. Tickets are $75 per person. Michael Franz, the wine critic from the Washington Post, is our speaker for the evening, and the Washington Wine Academy is our host. We will be honoring the Medical Advisory Board that has served TSAGW so well over the past two years. In order to whet your appetite for the gala, here is a menu of some of the exciting items that will be up for bidding at the silent auction:
· Craftsman’s Bench Brittany Humidor - Reddish Burly humidor with Spanish cedar divider, humidifier, and hygrometer. Holds up to 60 cigars. Donated by The Humidor Cigar Shoppe.· AirTran Airways Certificate - good for roundtrip travel for two to anywhere they fly in the US! Travel is non-refundable and non-transferable and must be completed by 10/31/05. The value of these tickets ranges to upwards of $1,000. Donated by AirTran Airways.· Gift Certificate for Two to any Performance at The Shakespeare Theatre - No restrictions. Tickets need to be used by 9/21/06. The package includes 2 vouchers for a complimentary drink, a merchandise coupon good for any time at the merchandise counter at the discounted Bard price, a lovely calendar, and a 2004-2005 season events booklet. This package has a value of $282.00! Donated by Jim & Esthy Adler, Adler Associates.· First of its Kind, Limited Edition Redskins Football - signed by one of their brightest new rookies, #24, Shawn Springs. The ball is accompanied by an official certificate of authenticity. This ball is number 455/25,000 for the coming year. Donated by The Washington Redskins. Five Pieces of Original Artwork - all framed, winning entries in our 2004 art contest. · American Flag that Flew Over the Capital on September 11, 2004 - A letter of authenticity and a personally signed acknowledgment is included. Donated by Congressman Chris Van Hollen.· Chic Martini Basket - A handsome, silk-lined picnic basket filled with a 1.75 liter bottle of Grey Goose L’Orange, two martini glasses, and one stunning martini shaker. We have also added a picnic of Swiss treats. Donated by Sergeant Ronald Wyatt.· Original fused glass jewelry - A unique, complete set of fused glass jewelry donated by Fusion Studios. The set includes a lovely necklace, earrings, and bracelet. Valued at $200.00.· Signed Sports Memorabilia by Jack Nicholaus - Donated by Mr. Michael Mox.
To purchase tickets for the wine tasting, call the TSAGW office at 301-681-4133. or go to our website, www.tsagw.org We hope to see you at the gala!
2. Dear TSA Community,
Now that the House and Senate have appointed conferees to the House-Senate conference committee on IDEA reauthorization, TSA members need to urge the conferees to keep the Senate language on discipline. The conference committee will be tasked with working out the differences between the two bills (S. 1248 and H.R. 1350).
Although Congress is currently in recess, staff from both bodies will be working on a compromise IDEA bill between now and the time Congress returns for a lame-duck-session in November.
To read more about this alert and then take action, please visit the TSA Legislative Action Center within the Public Policy section of the TSA website http://tsa-usa.org.
Regards, Jeremy Scott
3 The Northern Virginia Support Group meets at 7:30PM at Fairfax Inova Hospital in the Physician’s Conference center, Rooms B & C, 3300 Gallows Road, Falls Church, VA
They will next meet on Wednesday, November 17, 2004: Educational Advocacy for Parents - "Parents as Advocates and Partners." The Fairfax County Public Schools Parent Resource Center offers a wealth of resources for parents navigating the special ed process. Marsha Goldberg, the PRC director, will provide an overview of the NEW (yes, again) IEP forms, as well as what to expect when negotiating services and accommodations for your child. She'll answer your questions about "the system" and provide guidance on how best to work as a partner with school staff to ensure your child receives the services he/she needs. The presentation will be appropriate for those outside the Fairfax school system, too. Parents new to the special education process, as well as those actively engaged, will all benefit from Marsha's experience and expertise in the advocacy field.
4. Do you wish you child’s classmates understood more about Tourette syndrome (TS)? Would you like to arrange for an engaging and educational video presentation about Tourette syndrome in your child’s classroom?
You’ve Got a Friend is a video-based classroom presentation developed for children ages 5-12 to educate the classmates of a child with TS. The goal of the You’ve Got a Friend program is to educate classmates of a child with TS and promote empathy, resulting in improved peer relations, higher self-esteem, and better social adjustment for a child with TS.
Researchers at Danya International, working with the Tourette Syndrome Association of Greater Washington, are conducting a National Institute of Mental Health (NIMH)-funded research study of the effectiveness of the You’ve Got a Friend program. This study is nation-wide and families are being recruited from throughout the country. Results of the study should help justify the use of, and importance of, such educational programs in schools. And participation is easy -- the presentation will be scheduled and conducted by a TSA chapter or Danya representative, and the parent, child with TS, and his/her teacher will be asked to complete 3 sets of questionnaires. All participating families and the teachers will be financially compensated for their involvement in the study.
In use for more than three years, You’ve Got a Friend has been very well received by parents and kids. Preliminary evaluations indicate classmates report more favorable attitudes toward their peer with TS, and more knowledge about TS, following the presentation and video.
For more information about this study (with absolutely no obligation to participate) to promote understanding and awareness of Tourette syndrome in schools, contact TSAGW.
5. An Easy Way to Give: Payroll Deduction
Giving to TSAGW through payroll deduction at your place of employment is simple, pain free, and effective. If writing a check to TSAGW is difficult right now, you can still help support us. Giving through payroll deduction at your place of employment is a simple, pain free and effective way to help.
Having only five or ten dollars deducted from your paycheck each pay can make a big difference in helping us continue to support the Tourette community by delivering services and support programs, fostering community understanding and educating the general public about Tourette. Many people look at the deduction as no more than the cost of a fast food meal, a movie ticket, or a popular magazine.
Many employers run payroll deduction campaigns during the fall. If yours does, please consider authorizing an amount to be deducted from your check each payday and designating the Tourette Syndrome Association of Greater Washington as the recipient. Most pledge forms have a way for you to say exactly where you want your money to go.
If there is no charitable giving campaign where you work, let us know. We will be happy to have our representative contact your employer about the possibility of doing one.
Thank you for your support of TSAGW.
6. Comprehensive Behavioral Intervention for Tics (CBIT)
TREATMENT RESEARCH STUDY VOLUNTEERS NEEDED
Interested in free therapy for Chronic Tic Disorders and helping us determine its efficacy?
Children and adolescents (9-17 years of age) with either Tourette’s or Chronic Tic Disorders who are interested in behavioral interventions for decreasing tic severity are eligible for this research study at Johns Hopkins Hospital. A growing body of evidence supports the potential of behavioral treatments as an effective intervention for tics. Treatment involves 11 sessions of a comprehensive behavioral intervention for tics (CBIT) and/or psychoeducation-supportive therapy (PST), which will take place over a 22-week period. Both therapies are designed to be used on their own or in addition to your child’s existing medication for tics. This research study is part of a multi-site collaborative effort funded by the National Institute of Mental Health (NIMH) and the Tourette Syndrome Association (TSA). All treatment received in this research study is free. Families who have children with either chronic tic disorder or Tourette’s disorder may be eligible. If you are interested in participating, or for more information, please contact Luke Mason at (410) 955-1551 or by email: tics@jhmi.edu.
Principal Investigator: John Walkup, M.D. Co-Investigator: Golda Ginsburg, Ph.D.
Johns Hopkins Medicine
JHM-IRB Pr. No. 04-05-17-01
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