Advocacy at the MDF

The Myotonic Dystrophy Foundation (MDF) plans to advocate for legislation, research and infrastructure initiatives that we believe are in the best interest of the DM community. Wherever possible, MDF seeks to leverage existing efforts and partner with other organizations that have a common interest in the muscular dystrophies.

For 2008, there are three specific activities where MDF will focus its efforts:

  • Support for current legistation related to the muscular dystrophies
    • MD CARE Act Reauthorization - In 2001, the Muscular Dystrophy Community Research and Care Act (MD Care Act) was passed, mandating the establishment of several centers of excellence for the muscular dystrophies; in addition, it placed increased emphasis on research for five years, working toward further understanding of the disease mechanism and the development of treatments and cures for the muscular dystrophies. The MDF has joined a group of stakeholders --- including the Muscular Dystrophy Association (MDA), Parent Project Muscular Dystrophy (PPMD) and others --- to galvanize efforts to try to get the MD Care Act re-authorized in 2008, and to ensure that the interests of families living with DM are specifically included in this legislative initiative.  Learn how you can help.
  • Attendance at existing Muscular Dystrophy Advocacy Conferences: Members of the MDF board participated in PPMD’s advocacy conference in Washington, DC, February 10-12, 2008.
  • National Registry for Myotonic Dystrophy In 2001, the National Institutes of Health (NIH) appropriated funding to support the creation of a national registry database at the University of Rochester in New York. Its purpose is to collect information on the experience of individuals with myotonic dystrophy and to make it available, at a group level, to the research community for the purpose of supporting basic and clinical research activities. The Registry initiative is under evaluation for future funding, and MDF has been invited to participate as a key stakeholder in this process.

Furthermore, the MDF board also believes it is important to advocate inwardly to the families living with DM to encourage self education about their inherited disease and long-term participation in key research initiatives including:

  • Recruitment of DM-affected individuals to join registries
  • Participation in clinical research trials
  • Attendance at key events, such as annual family conferences, in order to build our community, enhance ideas, and establish a voice for all individuals impacted by this disease. For 2008, the MDF plans on building upon the success of the annual Southern California Myotonic Dystrophy Assistance and Awareness Support Group (MDAASG) conference and making it into a larger nationally-focused event.
  • Encouragement for affected families to educate themselves in order to become their own best advocates when seeking medical treatment and other necessary services.