Myotonic Dystrophy Foundation

Myotonic Dystrophy Foundation

The Myotonic Dystrophy Foundation (MDF) is the world's largest patient organization focused solely on myotonic dystrophy. Our mission, "Care and a Cure," is to enhance the quality of life of people living with myotonic dystrophy (DM) and advance research focused on treatments and a cure.

What we do

Support & Education

MDF provides emotional support, education and resources to affected individuals and their families, and conducts outreach to raise awareness about DM in the medical community and the general population. This includes:

  • MDF Toolkit – a comprehensive packet of information and resources for newly-diagnosed families and their doctors
  • MDF Warmline – staffed phone support for individuals needing a caring listener or information about resources and advice on living with DM
  • www.myotonic.org - a comprehensive website with information, resources and a digital academy with over 200 hours of videos and webinars on an array of topics
  • MDF Annual Conference – focuses on the latest information on daily living strategies and products, updates on research and advocacy, and more
  • Webinars and other assistance and education programs
  • TeamMDF– a grassroots volunteer corps of people living with DM, their families and friends, launched to create support groups, physician referral lists and other resources and programs. TeamMDF also helps develop an organized community face and voice for DM issues regionally, nationally and internationally

Research

  • MDF is committed to advancing research and therapies. Efforts include:
  • Supporting up-and-coming postdoctoral fellowships to expand the research base
  • Managing the Myotonic Dystrophy Family Registry
  • Investing in target identification and drug screening
  • Supporting a robust clinical research network to increase the efficiency of testing new drug candidates
  • Determining the true prevalence of the DM mutation in the population and documenting the socio-economic burden of the disease

Advocacy

MDF advocates for legislation, research, and infrastructure initiatives that will advance our understanding of myotonic dystrophy, accelerate drug development, and improve diagnosis and care. We strive to raise visibility of myotonic dystrophy and people living with DM with key stakeholders in Congress, federal and state agencies, medical professionals, and the media.


Website www.myotonic.org

 

Molly K White Molly K White

Molly joined the Myotonic Dystrophy Foundation in January 2013 as Chief Executive Officer to provide leadership, strategic direction and administrative oversight for the comprehensive programmatic and fundraising efforts of the Foundation and its staff.

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Sharon Hesterlee Sharon Hesterlee

Sharon joined PPMD in January of 2010 to lead its research efforts. She comes to PPMD after 11 years with the Muscular Dystrophy Association where she established MDA Venture Philanthropy (MVP), a program exclusively focused on the discovery and commercialization of therapies for neuromuscular disease.

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John Porter John Porter

John Porter, Ph.D. is Chief Science officer for the Myotonic Dystrophy Foundation, a non-profit focused on improving patient care and developing novel therapies for myotonic dystrophy.  He has a strong interest in ensuring the scientific rigor of preclinical study design, conduct, and the validity of data used to provide rationale for clinical trials, across all neuromuscular disorders, and played a key role in efforts to include such considerations in Federal and non-Federal grant review processes.

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