Mission: THE FOUNDATION HAS THREE MAIN PURPOSES: (1) TO ADVANCE RESEARCH BY AWARDING GRANTS TO CLINICAL INVESTIGATORS AND MEDICAL/SCIENTIFIC INSTITUTIONS COMMITTED TO FINDING THE CAUSE AND CURE FOR DYSTONIA; (2) TO BUILD AWARENESS BY SPONSORING WORKSHOPS AND SYMPOSIUMS FOR MEDICAL PROFESSIONALS AND PATIENTS AND BY PRODUCING AND DISTRIBUTING EDUCATIONAL MATERIALS BOTH PRINTED AND ELECTRONIC; AND (3) TO SPONSOR PATIENT AND FAMILY SUPPORT GROUPS AND PROGRAMS.
Programs: Science-includes:issuing 2 requests for applications, managing the peer-review process of 72 submitted grant, research fellowship and clinical fellowship applications, selecting, funding and managing 4 research grants, 1 research fellowship, 3 clinical fellowships, and 3 research contracts, all aimed at creating a better understanding of the mechanics and pathophysiology of dystonia, identifying genes, and developing improved treatments and ultimately a cure; meeting with pharmacological and biotech companies to engage them in the development of treatments for dystonia; continued funding of a clinical fellowship program designed to support training of physicians in preparation for a clinical and/or research career in movement disorders with special focus on dystonia;sponsoring and participating in domestic and international scientific meetings including "toward discovery of novel treatments for dystonia", "integrated approaches to dystonia", and meetings which were attended by researchers from all over the world;reviewing current research data and exploring studies needed to accelerate improved treatments;participating as a speaker at forums with the national institutes of health (nih) office of rare diseases research (ordr) to promote research and patient group relationships or collaborations;supporting and maintaining the availability of resources to accelerate dystonia research globally such as the dystonia brain collective, global dystonia registry, and dystonia international patient registry for use by the international dystonia community; serving in the fifth year as the administrative center for the dystonia coalition which was awarded a five-year national institutes of health (nih) grant to develop an international dystonia clinical network consisting of three projects: 1) developing a natural history study and biorepository; 2) revising the twstrs rating scale for cervical dystonia; and 3) developing, testing and refining a new diagnostic tool for spasmodic dysphonia. The foundation was responsible for managing $729,300 restricted for dystonia coalition work not included in the foundation's revenues and expenses.
awareness and education-includes:publishing 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 44,000 patients, families, and interested persons to inform them of the latest research and foundation activities; creating and disseminating over fifteen dystonia-related educational resources as well as promoting and distributing a children's book about dystonia and cd/dvd's to requesting individuals to educate them about the various forms of dystonia and treatment options; developing and launching a new website, hosting webinars, and electronic social networks such as the online dystonia bulletin board, twitter, facebook, and youtube to support easy access to information for affected persons and their families; creating and disseminating a monthly electronic newsletter and periodic email alerts to share information on events, news, and activities;creating and disseminating a dystonia awareness program designed to empower people to create awareness by sharing their personal stories; and participating in advocacy activities to promote awareness amongst lawmakers on topics important to dystonia patients. See schedule o, part iii 4c for details.
advocacy-the dmrf provides the staff and administrative support for the dystonia advocacy network, a collaboration of five dystonia organizations working to meet the policy needs of the dystonia community. For the past eight 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, resulting in them making the condition eligible for investigators to compete for research funding. On behalf of the five dystonia advocacy network organizations, the dmrf utilizes a legislative consultant to track legislative activities on capitol hill, maintains an advocacy website, 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 during the annual advocacy day and as needed throughout the year to advocate on behalf of the dystonia community on issues such as increased research funding for the national institutes of health, access to healthcare, and appropriate, affordable reimbursement for dystonia treatments.
In December of 2013, Charity Navigator awarded the DMRF the prestigious 4-star rating for good governance, sound fiscal management, and commitment to accountability and transparency. Only one quarter of the charities received the highest rating. According to Charity Navigator guidelines, receiving four out of a possible four stars indicates that the DMRF adheres to good governance and other best practices that minimize the chance of unethical activities and consistently executes its mission in a fiscally responsible way.
As I noted back when I posted in 2011, the DMRF’s organizational efficiency rating has always been very high, reflective of the DMRF’s strong commitment to working as efficiently as possible. In 2013, we scored 100 out of a possible 100 points in the category of Accountability & Transparency.
Information on our programs, financial reports, tax filings and operating plan are all available on our website.
For each of the 4 years ending in 2008, the Dystonia Medical Research Foundation (“DMRF”) had received a 3-star rating or higher from Charity Navigator. For 2009, the DMRF received a 2-star rating and we want our donors, prospective donors and members to know the reasons for this decrease. The decrease is solely due to a decrease in the DMRF’s Organizational Capacity rating score. This score measures the DMRF’s revenue and program expense growth over a 4-year period as well as 2009’s working capital ratio. The DMRF achieved significant revenue and commensurate program expense growth in the years prior to the economic downturn. It is against this increased historical base that the 2009 revenues and expenses are reflecting negative growth.
Even with these reduced revenues as compared to prior years, the DMRF funded 19 research grants, fellowships and research contracts in 2009 and funded 25 in 2010. The DMRF has been serving the dystonia community for 35 years; we are committed to stimulating research and providing support to those affected by dystonia until it is no longer needed.
It is important to note that the DMRF’s Organizational Efficiency rating, the measure of how an organization manages program and non-program expenses (or “how well it functions, day-to-day,” per Charity Navigator), is the highest it has been in 5 years, reflective of the DMRF’s strong commitment to working as efficiently as possible. In fact, the DMRF’s Organizational Efficiency rating has varied by less than 1 point over these past five years.
For more information on our programs, financial reports, tax filings and operating plan, please visit the DMRF’s web site.
DMRF helps to create awareness, research and outreach to the half of million people living with Dystonia in North America alone. With amazing, dedicated and hard-working staff, they help to people meet others with Dystonia. I was born with Dystonia and not diagnosed correctly until age 24. This is when I found the DMRF. Almost 10 years later, because of all the support of the foundation, I met other people with Dystonia, was inspired to have deep brain stimulation surgery from talking to peers, and have meet people on online support groups all over the nation and participated in a local fundraiser and some medical conferences. DMRF created an outlet that my family and I were searching for almost all my life. They truly changed my life.