Dystonia Advocacy Network - About the DAN


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About the DANMembersPublic Service AwardsProgress and Impact

About the DAN

The Dystonia Advocacy Network (DAN) is a grassroots organization that brings dystonia-affected individuals together to speak out with a single, powerful voice on legislative and public policy issues which impact the dystonia community. 

The DAN was established in 2007 in order to leverage our resources for maximum effect in the legislature. No matter what type of dystonia you have, the DAN ensures that your voice will work in concert with other dystonia advocates on legislative initiatives which benefit all dystonia patients.

The DAN has the following responsibilities:

  • Develop, implement and manage a legislative and policy agenda to meet the needs of the dystonia community.
  • Develop and manage the communications and resources necessary to achieve legislative goals.
  • Speak with a united voice for the dystonia community.
  • Develop, implement and manage a system of legislative advocates to achieve legislative goals;
  • Monitor and track legislative issues relative to issues pertaining to the dystonia community;
  • Develop and maintain Congressional relationships and identify dystonia champions;
  • Develop and oversee the use of advocacy tools;
  • Evaluate annually the effectiveness of actions and activities; and
  • Explore areas of collaboration.

Dystonia advocates develop relationships with their legislative leaders to help them understand the challenges of those living with dystonia.


Members

The Dystonia Advocacy Network (DAN) welcomes and represents individuals with all forms of dystonia, and is led by the following dystonia organizations:

Benign Essential Blepharospasm Research Foundation (BEBRF)

The mission of the Benign Essential Blepharospasm Research Foundation, Inc. is to fund and promote medical research in the search for the cause and cure of blepharospasm, Meige, and other related disorders of the facial musculature, to provide support, education and referrals to persons with these disorders, and to disseminate information and serve as an authoritative resource to the medical community and the general public.

ST/Dystonia, Inc.

The mission of ST/Dystonia, Inc, is helping people find a faster diagnosis and more effective treatment; thus empowering them to achieve a higher quality of life.

Dystonia Medical Research Foundation (DMRF)

The mission of the Dystonia medical Research Foundation is to advance research for more treatments and ultimately a cure, to promote awareness and education, and to support the needs and well being of affected individuals and families.

National Spasmodic Dysphonia Association (NSDA)

The mission of the National Spasmodic Dysphonia Association is to advance medical research into the causes of and treatments for spasmodic dysphonia, promote physician and public awareness of the disorder, and provide support to those affected by spasmodic dysphonia. The NSDA is the only organization dedicated solely to the SD community.

National Spasmodic Torticollis Association (NSTA)

The mission of the National Spasmodic Torticollis Association (NSTA) is to support the needs and well being of affected individuals and families; to promote awareness and education; to advance research for more treatments and ultimately a cure.


Public Service Awards

When a Member of Congress identifies himself/herself as a true champion of the dystonia community by going above and beyond to improve the health of dystonia patients, they are presented with the DAN Distinguished Public Service Award. This exemplary service can range from raising critical awareness of dystonia to using a political office to bolster research or improve patient care. Over the years, the DAN Distinguished Public Service Award has been presented to Senators and Representatives, Democrats and Republicans. The common thread that links all award recipients together is that they respond to the needs of the dystonia community not just as elected officials, but as caring friends who want to help. 

2010: Congressman C.W. Bill Young (R-FL-10th)

The 2010 DAN Distinguished Public Service Award was presented to Congressman C.W. Bill Young (R-FL-10th). Congressman Young is a military veteran who currently serves his country as Ranking Member of the powerful House Defense Appropriations Subcommittee. Through his leadership position, Congressman Young helps to craft the annual Defense Appropriations Bill and his support was critical to ensuring that “dystonia” was added to the list of conditions deemed eligible for study through Department of Defense Peer-Reviewed Medical Research Program in the FY 2010 Defense Appropriations Bill.

Congressman Young represents the Saint Petersburg/Clearwater area of Florida; a congressional district with many dedicated dystonia advocates. In 2009 these advocates committed themselves to educating the Congressman about dystonia, particularly the emerging issue of dystonia amongst our veterans, and urging him to take action and address these issues. The Congressman and his office responded almost immediately to this call to action and he continues to provide assistance to the dystonia community on a regular basis. One of Congressman Young’s dedicated constituents, Emma Mattes, had the honor of presenting him with the DAN Distinguished Public Service Award in a ceremony in the Congressman’s Washington, DC office during the 2010 Dystonia Advocacy Day.     

Past DAN Distinguished Public Service Award recipients include:

2009: Congresswoman Jan Schakowsky (D-IL-9th)

Congresswoman Schakowsky is a tireless champion of the dystonia patient community. She is a veteran member of the House Energy and Commerce Committee’s Health Subcommittee, which has jurisdiction over health care issues in the House of Representatives. Over the years she has supported a number of significant initiatives to expand dystonia research and improve patient care.

2008: Congressman James Walsh (R-NY-25th)

When Congressman Walsh retired from Congress in 2009, he was the Ranking Member of the House Appropriations Committee’s Labor-Health and Human Services-and Education Subcommittee. This Subcommittee has jurisdiction over funding public health programs, like the National Institutes of Health. Congressman Walsh routinely worked to expand dystonia research and he was crucial in raising awareness of the need to facilitate dystonia research through the Department of Defense amongst defense appropriators in the House. 


Progress and Impact

Department of Defense Facilitates Dystonia Research

Medical literature has identified a link between traumatic injuries and the onset of dystonia. Traumatic injuries and subsequent dystonia are constant threats to our military personnel. Dystonia advocates work tirelessly to ensure that the Department of Defense (DOD) and its medical research program is a stakeholder in the fight to improve treatment options for our dystonia-affected veterans. Congressional outreach and education by dystonia advocates across the country resulted in legislators adding “dystonia” to the list of conditions deemed eligible for study through the DOD Peer-Reviewed Medical Research Program in the FY 2010 Defense Appropriations Bill.     

Expansion of the Dystonia Research Portfolio at National Institutes of Health

Each year dystonia advocates encourage Congress to significantly increase funding for the National Institutes of Health (NIH) and support expansion of the dystonia research portfolio at NIH. This sustained outreach has helped funding for dystonia research at NIH grow from approximately $10 million annually to its current level of just under $20 million annually. The present level of funding includes an impressive new $6 million, 5 year clinical research initiative known as the “Dystonia Coalition” which was awarded in 2009.     

Follow-on Biologics

Over recent years Congress has been working to establish an approval pathway for follow-on or generic biologic products at the Food and Drug Administration (FDA) (botulinum toxin is a biologic). Dystonia advocates educated their legislators about the potential dangers of poorly regulated toxic products and encouraged them to adopt an approval pathway with significant patient safety provisions. Congress responded in 2010 by establishing a follow-on biologics approval pathway at FDA that includes strict patient safety standards.

Genetic Information Nondiscrimination Act

In 2008 Congress passed, and the president signed, the Genetic Information Nondiscrimination Act (P.L. 110-223). GINA, for short, is a critical piece of civil rights legislation that encourages individuals to better manage their health by undergoing testing to learn of predispositions to, or the development of, certain genetic conditions by making it illegal for employers and insurers to use the results of those tests to discriminate against the individual. After being hung-up in the legislative process for close to a decade, a groundswell of support by the patient community saw that GINA was ultimately passed by a vote of 414 to 1 in the House and 95 to 0 in the Senate.