Dystonia Medical Research Foundation

Program: awareness and educationpublishing the "dystonia dialogue" news magazine three times a year under the direction of the volunteer editorial board and distributing it via mail or electronic copy to over 53,000 patients, families, and interested persons to inform them of the latest research and foundation activities; andcreating and disseminating over twenty-nine dystonia related educational resources as well as promoting and distributing a children's book about dystonia and cd/dvds to requesting individuals to educate them about the various forms of dystonia and treatment options; andhosting a comprehensive website, webinars, and electronic social networks such as the online dystonia bulletin board, twitter, facebook, and youtube educational resources postings to provide easy access to information for affected persons and their families; andcreating and disseminating a monthly electronic newsletter and periodic email alerts to share current information on dystonia related events, news, and activities; andcreating and disseminating a dystonia awareness program designed to empower people to share their personal stories and increase the public's awareness of dystonia; andparticipating in advocacy to promote awareness amongst lawmakers on topics important to dystonia patients. See schedule o, part iii 4d for details.

Program: membership and supportplanning and supporting virtual community forums attended by patients and their families which provide information about current research and treatment options and an opportunity to develop personal networks and reduce isolation for those affected by dystonia; andcreating virtual educational forums for dystonia-affected persons and their families; and promoting support resources to aid in disease management and quality of life such as a network of support groups and an electronic social network, including bulletin boards and telephone communications with individuals affected by dystonia and other interested parties; andmanaging 55 support groups and forums in communities across the country as an enduring resource for those affected by dystonia and their families; providing ongoing leadership training and networking for volunteer support leaders by creating electronic forums for leaders to share experiences and provide peer support, providing webinar training and ongoing support for support leaders, and distributing a support group manual which provides valuble information and resources for effective support leadership (146 support group meetings were held);andproviding meeting management support such as email and postal notifications and a web-based calendar about upcoming support group meetings including supplying dystonia brochures to all support groups.

Program: advocacy the dmrf provides the staff and administrative support for the dystonia advocacy network, a collaboration of four dystonia organizations working to meet the policy needs of the dystonia community. For the past eighteen years, the dystonia advocacy network has been instrumental in educating congress about the benefits of listing dystonia as a condition eligible for study on the department of defense (dod) peer-reviewed medical research program (prmrp), thus making the condition eligible for investigators to compete for research funding. $32 million has been awarded on dystonia research through the dod prmrp program. On behalf of the four dystonia advocacy network organizations, the dmrf engages a legislative consultant to track legislative activities on capitol hill, and electronically disseminates action alerts to stay connected with key legislators. The dmrf also supports a nationwide network of volunteer advocates who continually work to educate members of congress about dystonia and advance the community's legislative agenda. Volunteers meet with policymakers as needed throughout the year to advocate on behalf of the dystonia community on issues such as increased research funding from the national institute of health, access to healthcare, and appropriate, affordable reimbursement for dystonia treatments.