Follow this link to learn more.
Please review and act on this National TSA request today.
“This is the first time in our 39-year history that TSA has collaborated with the pharmaceutical industry and helped to fund a clinical drug trial for the potential treatment of TS. It marks the beginning of a new phase in our efforts to facilitate the development of effective and safe medications that are urgently needed for people with TS,” said Judit Ungar, TSA President.
The TSA will also assist with recruitment for the clinical trial.
The FDA granted ecopipam an orphan-drug designation for the treatment of TS in September 2010. Richard Chipkin, President and CEO of Psyadon, said: “We are honored to be selected as the first company the TSA has collaborated with on a clinical drug study. Experiments in animals suggest that ecopipam, which belongs to a class of agents referred to as dopamine D1 antagonists, interacts with nerve cells and systems in the brain that are thought to contribute to the development of tics and other symptoms in TS. Based on these studies, there is a good rationale and a logical basis for examining this drug’s efficacy in reducing tic severity in individuals with TS.”
The clinical trial, which has already begun, is a Phase 2a, open-label, non-randomized trial to examine the ability of ecopipam to both reduce tic severity and also to determine its safety in individuals with TS who are 18 to 65 years old. The study, which is being conducted at four sites across the U.S. by leading experts in TS, is expected to last for several months. More information is available here.
Psyadon and TSA anticipate the data from this clinical trial will be released by mid-2012.
We’ll gather starting at 7 p.m. in the Gillis Board Room at St. John’s Mercy Medical Center, 615 S. New Ballas Road, St. Louis, MO 63141. We hope to see you there.
The Children’s Health Act of 2000 was the first time Tourette Syndrome (TS) was mentioned by name in federal legislation. That legislation authorized a Public Health, Education and Research Program on TS at the U.S. Centers for Disease Control and Prevention (CDC).
Each year, the Tourette Syndrome Association must request an appropriation from Congress to continue this CDC program. The money goes toward raising public awareness about TS and training doctors and other allied professionals on how to recognize, diagnose, treat, and help people with TS. (Note: The funds for this program are an appropriation, NOT an earmark.)
It has taken decades of hard work to get to where we are now with awareness of TS. We cannot afford to lose momentum.
To take action, please consider the following options:
Option #2: Write to your Members of Congress through the tools provided in the TSA Legislative Action Center.
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SAMPLE MESSAGE TO CONGRESS
After being transferred to the office of the relevant Member of Congress …
After being connected with the appropriate Legislative Assistant, either live or by voice mail …
Tourette Syndrome or TS is a complex, genetic, neurological disorder that is greatly misunderstood by the public and frequently mis-diagnosed by doctors because it is often accompanied by other disorders. I am very concerned about proposed cuts to U.S. health programs, in particular, the Tourette Syndrome Public Health, Education and Research Program at the CDC.
The support of Congress in funding this program for the past seven years has provided urgently needed training for doctors and other allied professionals on how to recognize, diagnose, treat, and help people with TS. Unfortunately, with no known cure, the challenges of living with TS are often so great that a long-term investment is needed in improving the lives of individuals who have TS.
As Congress moves forward with the budget for the federal government’s 2012 fiscal year, please keep my family and all individuals living with TS in mind.
Specifically, I hope your office will sign on to the “Dear Colleague Letter” that is circulating in support of the Tourette Syndrome program. For more information about that letter, you can contact …
In the House: Michael Grogan in Congresswoman Carolyn McCarthy’s office OR Jeffrey Last in Congressman Leonard Lance’s office
In the Senate: Ariel Simon in Senator Charles Schumer’s office.
Also, Elridge Proctor at the Tourette Syndrome Association can help answer any questions you might have. She can be reached at 202-408-7009.
Thank you for your consideration.
The meeting will be held at our usual location, in the Gillis Board Room at St. John’s Mercy Medical Center, 615 S. New Ballas Road, St. Louis, MO 63141.
Topics will include the transition from elementary to middle school; from middle school to high school; and from high school to college. Our confirmed speakers are: Alice Hein and Mary Beth Graefe, both middle school counselors; JoAnn Noll, parent educator for the St. Louis County Special School District; and Lindi Mullins, access specialist for St. Louis Community Colleges.
The Santa Cruz rocker has wowed the judges with his passionate performances and wowed America even more with his personal story about living with Tourette Syndrome as well as Asperger’s.
James’ story has already created unprecedented national awareness of Tourette Syndrome. If he continues through to the top 10, to be announced March 24, he will be part of the highly popular nationwide tour, bringing him even more success and exposure and creating additional awareness of TS.
James’ next performance will be Wednesday, March 9, live on Fox, starting at 7 pm Central Time. For two hours immediately following the broadcast, viewers can vote for James in three different ways: by calling the toll-free number listed during the broadcast, by text message, and — for the first time this season — online. You can vote as often as you like by phone or text message; and up to 50 times online.
So don’t forget to tune in and watch James’ next performance and vote to help him advance to the next round.
The meeting starts at 7:00 p.m. in the Gillis Board Room at St. John’s Mercy Medical Center, 615 S. New Ballas Road, St. Louis, MO 63141.
We hope to see you there.
