Tourette Association of America

 
 

Roughly 1 million Americans have Tourette Syndrome, but only 50% receive a diagnosis. That means roughly half are going unsupported, not fully aware of why their mind and body is betraying them in ways they cannot seem to understand. This staggering statistic underscores the need for heightened awareness efforts surrounding the condition. The good news? The Tourette Association of America, a proud member of the Movement Disorders Policy Coalition, works tirelessly to advance knowledge and support those living with Tourette Syndrome or another tic disorder. 

While there is no cure for Tourette Syndrome, the Association joins forces with other advocacy groups, like MDPC, to achieve their goals of fostering acceptance, raising awareness, advancing research and providing ongoing support to patients and families impacted.

The neurodevelopmental disorder affects people of all ages, ethnicities and backgrounds, and causes sudden, involuntary movements or sounds called tics. Tics can range from mild to severe and are disabling in some cases.

Recognizing the physical, emotional and psychological challenges associated with Tourette Syndrome, the Tourette Association of America brings together advocates and offers valuable resources for patients. The only national organization dedicated solely to serving the Tourette and tic disorders community, the Association has already made a significant impact and is crucial for the continued, collective, efforts of the community. It directs a network of 31 chapters and 85 support groups. It also recognizes 18 Centers of Excellence across the country to improve access to care for people living with the condition.

“There is strength in numbers,” said Amanda Talty, President and CEO of the Tourette Association of America, “and connections like the one we have with MDPC serve to make us better, break down barriers, and reduce stigma.” To learn more about various ways to participate and get involved with the Tourette Association of America during Tourette Syndrome Awareness Month, May 15 – June 15, visit Tourette.org.



Member Feature: International Essential Tremor Foundation

 
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Life with essential tremor can be frustrating. Simple tasks like tying shoes, brushing teeth or drinking from a glass become difficult challenges. 

International Essential Tremor Foundation, a Movement Disorders Policy Coalition member, is working to improve patients' lives through education and empowerment, celebrating the perseverance and ingenuity of people living with the condition.

“Essential tremor has no cure. And since there is no medication specifically designed for it, patients struggle to find effective treatment options,” says Executive Director Patrick McCartney. “We can't offer these patients a cure, but we can make sure they are educated, connected and empowered to take on the challenges of life with essential tremor.”

This March is National Essential Tremor Awareness Month. Join International Essential Tremor’s 2021 campaign, “Let’s Talk About ET”, to support advocacy efforts. 

The Movement Disorders Policy Coalition is proud to call the International Essential Tremor Foundation a partner. Together, we can increase public awareness and advance research initiatives for treatment options and a cure for essential tremor. 

To learn more about the International Essential Tremor Foundation’s advocacy efforts and membership visit essentialtremor.org or contact Executive Director Patrick McCartney at pmccartney@essentialtremor.org.

Member Feature: American Brain Coalition

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An active member of the Movement Disorders Policy Coalition, the American Brain Coalition uses education and advocacy to improve public understanding of functions of the brain. 

The group also empowers people living with brain conditions, including movement disorder conditions such as ataxia, dystonia, Parkinson’s and Tourette’s.

“The 50 million people living with disabling brain disorders deserve more research initiatives,” says Executive Director Katie Sale. “That will encourage additional treatment options, services and support that will improve patients’ quality of life and build a national commitment toward finding cures for these disorders.”

Bringing together organizations representing patients, families, providers and other stakeholders, the American Brain Coalition works to reduce the burden of brain diseases and increase funding for neurological disease research.

The Movement Disorders Policy Coalition is proud to partner with the American Brain Coalition to advance better care for those living with movement disorders.

To learn more about the American Brain Coalition’s advocacy efforts and membership visit americanbraincoalition.org or contact Executive Director Katie Sale at ksale@americanbraincoalition.org.

Now More than Ever, Access to Mental Health Treatment Matters

Now More than Ever, Access to Mental Health Treatment Matters

“I’ve been working with a patient, a male in his late 20s, for a few years now. He showed some early signs of schizophrenia in high school but worked through them and went to college across the country. It was there, away from everything familiar, that he had his first symptoms of psychosis. He left school and moved home.”