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The Myotonic Dystrophy Foundation is Ten!

MDF is celebrating a milestone anniversary: ten years of driving Care and a Cure for myotonic dystrophy via programs that now serve more than 10,000 patients and family members per year in 62 countries.

In honor of the season of giving, thanks to the generosity of special MDF community members, when you donate now through December 10th, your gift will be matched. The next $5,000 in gifts will be matched by Rick and Paget Haylon. We are grateful to the Haylons and the Giving Tuesday match by donors David Herbert (a MDF Board Member), his wife Mary Beer, and MDF community members James and Nancy Cook for doubling the impact of your support.


Yes, I’d like to donate and have my gift matched!

Because of the support of MDF donors and partners, we have made incredible strides in the search for myotonic dystrophy therapies, and in ensuring that families living with this disease have the support and resources they need to live their best lives.

“MDF is a jewel ... is something really special for patients and researchers… MDF is a hero… to all of us who care about the treatment of patients with myotonic dystrophy and their cure.” --Richard Moxley, III, MD, Professor, Department of Neurology, and clinician, University of Rochester

MDF Achievements

What does achievement look like over the last ten years? Highlights include:

  • MDF is now the largest and leading patient advocacy organization for myotonic dystrophy in the world
  • Over 14,000 people now make up the MDF community of families, researchers, donors and friends (a 100% increase since 2012), with over 1,100 myotonic dystrophy professionals and 13,000 patients and family members from more than 62 countries
  • MDF has driven pivotal expansion in research and drug development investment, including over 50 research grants totaling more than $7M in commitments, 89% of that since 2013, and 73% in the last two years alone
  • Over 10,000 families per year receive comprehensive resources and support services, including thousands of MDF Toolkits printed and shipped, over 4,500 downloads of the Anesthesia Guidelines in 2016 alone, and dozens of Warmline support calls and emails each week – the MDF Care investment has totaled more than $675,000 in the last two years alone, and continues to grow
  • Spectacular growth in outreach and communication, including a more than 900% increase in community members connecting and sharing via our Facebook page and groups, and website reach of over 14,500 visitors a month

The foundation staff now includes a Chief Science Officer, a Program Director and other key staff driving Care and a Cure for myotonic dystrophy. Their expertise has helped put MDF at the intersection of academic, industry, federal agency and international efforts to drive therapy development.

“The team at MDF has developed deep expertise and has become a partner in driving key activities to improve care and find treatments for myotonic dystrophy. We actively seek input from the Foundation when deciding the best course of action and next steps.” --Tetsuo Ashizawa, MD, Director, Neuroscience research program and clinician, Houston Methodist Neurological Institute, and member, MDF Scientific Advisory Committee

Care and Cure

With community support, MDF has accelerated our efforts to drive Care and Cure, including:

  • Engaging more than 17 biopharma companies in different stages of myotonic dystrophy therapy development
  • Driving the development of a comprehensive research and drug development environment, with the research network, cell lines, endpoint and biomarker exploration, regulatory pathway and other critical elements needed to attract new industry investment and support successful clinical trials
  • Developing the first-ever clinical care recommendations for myotonic dystrophy, to educate clinicians who treat patients about the disease and improve patient access to quality care around the world
  • Fully-staffed Care program, with a professional Warmline, international support groups, a vibrant, multi-track annual conference, toolkits and an expanding array of resources to help patients and families negotiate life with myotonic dystrophy

“Before I went to my first conference, I had never met anybody outside my family with myotonic dystrophy, and I was actually scared going there because I didn’t know what to expect. And it turned out to be so encouraging and empowering.” --MDF community member and supporter

What's Next?

We have an urgent agenda, including funding the development of critically-needed natural history data and clinical trial infrastructure that wil propel the pursuit of therapies forward, delivering comprehensive resources for families with a 2017 focus on those with congenital, childhood and juvenile-onset children, updating and translating our MDF Toolkit and other Care resources for our large and expanding international audience of families and clinicians, and much more.

Committed and generous community partners have brought this work to life, and 87 cents of every dollar donated to MDF goes directly to Care and Care programs . We need your ongoing partnership to ensure that this work continues. Please consider making a gift to the foundation this holiday season. And thank you, from all of us in the MDF community, for making this work possible.





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