Judy Marks remembers getting sick at age 32 and feeling like it was the worst flu she ever had, only it didn’t go away. Her doctor dismissed it at first as being all in her head. Her sister thought she was faking it to get attention. Her mother-in-law said she was “lazy.”
MDF included a number of authors and artists at the 2017 MDF Annual Conference. Learn more, in these artists' words, about some of their creative efforts and how to access their publications and artwork.
A number of community members have asked MDF why the Foundation is not listed on the Charity Navigator (CN) website with a ranking on our financial stability and use of funds. The requirement that our community members join CN and provide their personal data is something we are unwilling to ask the MDF community to do.
Margaret Czajka has written a moving story written about her family’s struggle to find a diagnosis and navigate life with a neuromuscular disease in Poland.
To develop new therapies for patients living with myotonic dystrophy (DM), specific infrastructure and information needs to be in place to make clinical trials feasible. The information needed for CDM trials is likely to be different than that used for adult trials.
Marsha Dugan likes to describe herself as simply a stay-at-home mom, and avoids talking about her MBA and experience in international business, finance and marketing. Marsha, 60, who stepped back from the business world to raise her two sons, joined the board of the Myotonic Dystrophy Foundation in January 2017.
After a year of outreach and education, MDF has successfully convinced the Social Security Administration (SSA) to list congenital myotonic dystrophy (CDM) in its Compassionate Allowances program, significantly easing the application and review process.
AMO Pharma released interim results for a Phase 2a safety and toxicity study of Tideglusib (also known as AMO-02) for adolescents and adults with congenital myotonic dystrophy.
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