|
Tourette Syndrome Association, Inc.
Weekly TICker
Week ending March 14, 2014
|
|
|
|
|
|
|
Dear TSA Member,
|
Welcome to this week's recap of TSA's latest news and information to keep you updated about our recent events and to share with you stories of interest to the Tourette Syndrome Association community.
If you have any questions about any of our announcements or upcoming events, please email us or call 718-224-2999.
Thank you for your continued support!
The national Tourette Syndrome Association, Inc.
|
|
|
|
|
Hollywood Heals Spotlight on Tourette Syndrome
Celebrity Event a Huge Success!
|
 | |
Actress Ellen Pompeo
|
The first annual "Hollywood Heals: Spotlight on Tourette Syndrome" hosted by the national Tourette Syndrome Association (TSA) was an incredible success, with over 400 guests gathering at the Conga Room at LA Live on February 27. Incredible awareness was raised for the Association and the misunderstood, life tormenting disorder, Tourette Syndrome. The event also raised much needed funds for TSA's research and support programs. With hors d'oeuvres catered by Wolfgang Puck, a silent auction, and dozens of celebrity supporters and vast media coverage, the event was an extraordinary and spirited one to be remembered. Sponsored by CBS, and emceed by actor Dash Mihok ("Ray Donovan") and jazz musician Michael Wolff (who also serves as national TSA's Chairman of the Board of Directors), the event featured performances by individuals living with Tourette Syndrome including both Michael (who was joined by all all-star jazz band) and Dash (who performed a rap); Michael's sons, singers Nat and Alex Wolff; 2013 "X-Factor" contestant Carlos Guevara, accompanied by fellow "X-Factor" contestants Sweet Suspense; and "American Idol" season 9 finalist James Durbin who closed the evening with an acoustic performance, before the crowd danced to the tunes of Hollywood DJ Michelle Pesce.  | |
Jon Voight, Eddie Marsan, Dash Mihok, Liev Schreiber, Pooch Hall and Steven Bauer of the Showtime series, "Ray Donovan."
|
Arriving on a teal carpet (Tourette Syndrome's awareness color) to dozens of paparazzi, celebrity guests and supporters included the cast of Showtime's "Ray Donovan: including Liev Schreiber, Jon Voight, Eddie Marsan, Pooch Hall, Steven Bauer, Austin Nichols, Devon Bagby, Kerris Dorsey, Octavius Johnson, and Johnathon Schaech; Ellen Pompeo; Harold Perrineau; Doris Roberts; Nia Vardalos and her husband Ian Gomez; Andie MacDowell; Polly Draper; Josh Hopkins; Sal Masekela; Amy Aquino; Costas Mandylor and dozens more. In addition, TSA presented a Lifetime Achievement Award to producer Jeffrey Kramer, for "nearly two decades of dedication and commitment toward shining the spotlight on raising positive awareness and understanding about Tourette Syndrome," as well as two "Shining Star" awards to Dash Mihok and Carlos Guevara, for "outstanding personal and professional contributions toward shining the spotlight on positive awareness and understanding about Tourette Syndrome during the past year." After a dozen years of hosting successful fundraising events in Beverly Hills, this was TSA's first West Coast event since 2010, and plans are underway for the "Hollywood Heals: Spotlight on Tourette Syndrome" second annual event scheduled for February 2015. To view teal carpet arrival and other photos from the event, click here.
|
|
|
National Tourette Syndrome Association Celebrates
Tenth Year of Partnership with the CDC!
|
Partnership Allows TSA to Offer Education Programs for Medical and Allied Professionals, Education and School-Based Teachers and Clinicians Across the Country. Click here to read the official press release!
|
|
2014 TSA National Conference
On-Site Registration Available!
|
 If you are still thinking about attending next week's National TSA Conference in Arlington, Virginia, you can register on-site for any of our day sessions including the Newly Diagnosed seminar as well as General Sessions on Friday or Saturday (day passes available if you can only make one day!) Visit our Grand Registration Desk at the Crystal Gateway Marriott, 1700 Jefferson Davis Hwy in Arlington, VA. Registration begins Thursday, March 20 at 7:45 am for the Newly Diagnosed seminar, and for National Conference general sessions registration begins Thursday, March 20 at 2:30 p.m. We look forward to seeing you there!
|
|
You May Be Eligible For Financial Assistance For Medical Insurance-Find Out If You Qualify
The Affordable Care Act (ACA): Current Open Enrollment Ends March 31, 2014
|
According to recent research done by the Robert Wood Johnson Foundation, 83% of people who are uninsured say that they would probably enroll if they were able to get help to pay for it. Only 41 % of those who are uninsured were aware that millions of people could qualify for financial help. You may be eligible for financial assistance for medical insurance. Find out if you qualify here at your state's insurance marketplace. The last day of open enrollment for this phase of health insurance access through your state's Marketplace is March 31, 2014. Click here for more information and to apply for insurance if you need it. Individuals and Families: Call to start or finish an application, compare plans, enroll or ask a question. Available 24 hours a day, 7 days a week. 1-800-318-2596 TTY: 1-855-889-4325.
|
|
|
TSA-CDC Exhibits at NAPNAP Conference
|
This week from March 11-13, TSA-CDC exhibited at the 2014 National Association of Pediatric Nurse Practitioners (NAPNAP) Annual Conference in Boston, MA. This was the first year that TSA exhibited with NAPNAP, an organization that advocates for children's health by providing services in funding, education, and research opportunities to pediatric nurse practitioners (PNPs), as well as through its development and disseminations of educational materials to parents and families. The TSA booth reached over 180 PNPs including those in general pediatrics, pediatric neurology, and pediatric psychiatry. All booth encounters received free educational resources and program information to learn more about TS and to educate families in their practice. One nurse practitioner commented "My goal this year was to learn more about Tourette's Syndrome. [These materials] will help me to do that."
|
|
|
TSA-CDC Education Program Held in New York
|
On Tuesday March 11, TSA-CDC mounted an education program with the Burnt Hills - Ballston Lakes Central School District in Glenville, NY. Kathy Giordano, TSA's Education Specialist, presented to 20 teacher's assistants, who learned about TS and managing children with TS in the classroom. All of the attendees received free TSA-CDC materials that are geared towards educators. TSA-CDC would like to thank Sharon McTygue at Burnt Hills for her help in coordination and set-up, and special thanks to Kathy Giordano for providing a wonderful program.
|
|
TSA Holds CBIT Program on Long Island
|
The TSA presented a Comprehensive Behavioral Intervention for Tics (CBIT) program at the Feinstein Institute for Medical Research in Manhasset, NY on March 9 and 10. The TS-Behavioral Institute (TS-BTI) program is for licensed medical and allied medical professionals to help them achieve practical hands-on experience in using CBIT. Douglas W. Woods, Ph.D., John C. Piacentini, Ph.D., and Denis G. Sukhodolsky, Ph.D. gave a phenomenal presentation of CBIT to 25 attendees, including Dr. Cathy L. Budman who requested the program and organized it for the TSA to present at the North Shore Long Island Jewish Hospital. Also, we would like to thank Jane Zwilling, Co-chair and Chair Educator/Advocator of the LI Chapter, and her staff who were so generous with their hospitality of providing breakfast and lunch for the attendees and helping to make this program a success for the TS community.
|
|
TSA-CDC Holds CBIT Program in Chicago
|
On March 8, TSA-CDC mounted a Comprehensive Behavioral Intervention for Tics (CBIT) program in Chicago, IL at the University of Illinois, Psychiatric Institute. Dr. Doug Woods, Co-Chair of TSA's Medical Advisory Board, presented the full-day program to a small group of professionals in the fields of psychology, psychiatry, and social work. Dr. Woods provided an in-depth review of the CBIT protocol methods and the research supportive of the treatment. Upon completion of the program, all attendees walked away with a better understanding of TS management and application of CBIT. Special thanks to Dr. Judith Tellerman and Dr. Michael Schrift for their assistance in the planning of the program.
|
|
TSA-CDC Holds Education Program in California
|
 Teachers, School Psychologists, Directors of Special Education and Special Education Teachers of the San Juan Unified School District attended an "absolutely outstanding presentation" in Carmichael, CA on March 6. Kathy Giordano of the TSA Education Advisory Committee, presented this informative and interactive professional education program.
|
|
|
TSA CDC Holds CBIT Workshop in Westchester
| |
On March 6, the TSA-CDC partnership hosted a presentation on CBIT at the Westchester Division of New York Presbyterian Hospital. Shannon Bennett, PhD, Co-Director of the Pediatric OCD, Anxiety, and Tic Disorders Program at Weill Cornell Medical College, provided an overview of the CBIT protocol and shared clinical examples from her practice with an audience of psychologists, social workers, post-doctoral fellows, and nurses. |
|
TSA-CDC Presents in Louisiana
|
 On February 28, Tanya Murphy, MD, MS, Maurice A. and Thelma P. Rothman Chair of Developmental Pediatrics Professor, University of South Florida Departments of Pediatrics and Psychiatry presented Psychiatric Grand Rounds at LSU Health Sciences Center in Shreveport, LA.
|
|
TSA-CDC Presentation Held in Tennessee
|
Dr. John Piacentini gave a free TSA-CDC Community Outreach presentation in Memphis, Tennessee on February 22 at the Benjamin L Hooks Branch of the Memphis Public Library. His talk began with a broad overview of Tourette Syndrome and went into more depth about new treatments, including behavioral therapies such as the Comprehensive Behavioral Intervention for Tics. After Dr. Piacentini's presentation, Kerry Moore, Coordinator of the TSA Support Group of the Greater Memphis Area spoke with attendees about the support group and its activities.
|
|
|
Mark Your Calendars!
|
 March 19 - TSA Youth Ambassador Training in Arlington, VA
March 20 - TSA Trip to the Hill in Washington, DC
March 20 - Newly Diagnosed Seminar at National Conference in Arlington, VA
March 20 - 23 - TSA National Conference in Arlington, VA
May 3 - Ohio Tic Talk Walk in Ohio
May 15 - June 15 - Tourette Syndrome Awareness Month
May 31 - TS Awareness Walk in Green Bay, WI
June 7 - 2014 Sawdust Open to Benefit TSA in Farmington, CT
June 14 - National TSA Tourette Syndrome Awareness Walk in Flushing Meadows, NY June 14 - Long Island TSA Annual Family Fun Day in Dix Hills, NY
June 14 - North Dakota TS Awareness Walk in Bismark, ND
June 23 - Annual TSA Illinois Golf Classic in Lincolnwood, IL
June 30- Annual TSA Rosenthal Golf Classic in Westchester, NY
August 29, 30 and 31 - Disneyland Half Marathon (10K, 5K & Kids Races) in Anaheim, CA
September 29 - Annual TSA Jones Lang LaSalle Golf and Tennis Classic in Rye, NY
October 12 - Long Beach Marathon (Half, Bike Tour, 5K & Kids Race) in Long Beach, CA
October 18 - Indianapolis Marathon (Half, 5K & Kids Race) in Indianapolis, IN
November 2 - New York City Marathon in New York, NY
November 17 - Annual TSA Gala at the Pierre Hotel in New York City, NY
2015:
January 9, 10, 11, 12 - Walt Disney World Marathon in Orlando, FL
March 11, 12, 13 - International Congress on Tourette Syndrome in London, UK
for information on any of these events, please email TSA. |
|
|
|
|
|
|
