Mental Health America

Mental Health America is dedicated to addressing the needs of the one in five adults living with a mental health condition.

Despite the prevalence, mental health conditions are often wrongly associated with stigma. That means people who are struggling with mental health challenges may never get the support they need.  Among these are people living with movement disorders, who may experience a mental health condition as a comorbidity or symptom of their disease, or who may develop a movement disorder related to the use of certain medications.

“Mental Health America believes policymakers should talk with people about what they need to live the lives they want and support them in getting there,” said Schroeder Stribling, president and CEO of Mental Health America.

The Movement Disorders Policy Coalition is proud to join forces with Mental Health America and help advocate for public policies that support mental health as a critical part of overall wellness, including prevention services and integrated care services for all, with recovery as the goal. No matter the condition, every person deserves access to adequate support.

To learn more, visit mhanational.org.

Dystonia Medical Research Foundation

The Dystonia Medical Research Foundation provides support, education and empowerment to the 250,000 Americans living with dystonia.

Dystonia is neurological disorder that causes excessive, involuntary, and sometimes painful, muscle contractions. It’s also the third most common movement disorder behind essential tremor and Parkinson's disease.  

Founded in 1976, the Dystonia Medical Research Foundation aims to find a cure for this movement disorder community.

Individuals living with all forms of dystonia, friends and families, donors and health care professionals comprise the foundation. Together, they work to increase awareness and education, and help support the needs and well being of affected individuals.

The Dystonia Medical Research Foundation is more than a mission of advocacy. It’s a way of life. The group understands what it’s like for people living with dystonia, because 100% of the Board of Directors is personally impacted by dystonia—either themselves or a loved one is diagnosed.

At the foundation we believe in, “Showing up every day to make the next day better,” said Art Kessler, president of the Dystonia Medical Research Foundation.

The Movement Disorders Policy Coalition couldn’t agree more, and is proud to stand alongside the Dystonia Medical Research Foundation to do their difficult, yet crucial, work of finding a cure for dystonia.

Parkinson & Movement Disorder Alliance

More than 40 million Americans are impacted by movement disorders – a changing reality that no one can face alone. Whether you are someone living with a movement disorder, or a care partner, an adult child, a friend, a doctor or a support group leader, Parkinson & Movement Disorder Alliance is a uniquely people-oriented community designed to care for everyone in the  Movement Disorder Care  and Support Ecosystem^©. 

Since its inception, PMD Alliance has had the Movement Disorder Care and Support Ecosystem^© at its core. The uniquely supportive PMD Alliance  community  provides  innovative programming that fundamentally enlightens, informs, and incites positive change within that system. “We find that when the entire Ecosystem is strengthened, the stronger, more educated and more empowered we all are, the effect on those we serve is immeasurable,” says Sarah Jones, PMD Alliance CEO and co-founder. PMD Alliance serves and strengthens the Ecosystem with various programs and services that recognize everyone is unique and has their own distinctive needs – a belief that is shared with the Movement Disorders Policy Coalition. Their resources include:

• Online and in-person programming that reaches tens of thousands of people across the United States and in 34 countries worldwide.

• Training support group leaders and maintaining a network of 2,400 support groups.

• Their “PD&Me” mobile app for iOS and Android is the only hub of support and exercise groups in all 50 states.

• “Getting Real Online” is a virtual community for care partners and adult children. The platform includes a video library on more than 100 topics, as well as chat groups and discussion groups where you can interact with other care partners and adult children on a variety of topics.

• PMD Alliance will launch an inaugural Advanced Therapeutics in Movement & Related Disorders Congress in Washington DC, October 24-26, 2021 – further educating and connecting medical professionals who can then better support their patients.

The Movement Disorders Policy Coalition is proud to work alongside its member organization Parkinson & Movement Disorder Alliance to create a world where all people impacted by movement disorders are resilient, fully confident, embrace self-efficacy and are supported by their community. To learn more about PMD Alliance, visit www.pmdalliance.org.

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

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.