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Programs and Events

Support Group Shout-Out!

Did you know that MDF has 22 in-person support groups throughout the country, and 5 virtual support groups? MDF recently launched two new monthly virtual support groups:

CNS and Myotonic Dystrophy: Scientific Premise and Potential Targets Workshop

The Myotonic Dystrophy Foundation is currently planning a workshop to address CNS involvement in DM1, DM2 and CDM, to be held on September 12, 2019, in conjunction with the 2019 MDF Annual Conference, September 13-14, in Philadelphia, PA.

Annual Nationwide Children’s Hospital/OSU Myology Course

Nationwide Children’s Hospital and Ohio State University have operated a 5-day myology training course for the last seven years.  The course includes common lectures in the mornings and separate clinical and laboratory tracks in the afternoons.

MDF Medical School Roadshow

MDF designed this volunteer initiative to educate the next generation of medical professionals about myotonic dystrophy in order to improve clinical care and shorten the diagnostic odyssey. We need you!

Helping Herself by Helping Others

When Suzanne Perkins’ 16-year-old daughter Eliza had trouble opening jars and closing car doors, she took the teenager to the doctor, confident she would pin the problem on too much texting. But when her doctor sent her to a neurologist, Eliza’s diagnosis came quickly and with a wallop.

2018 HI Gala - Getting Away for a Good Cause

A tropical paradise was the ideal spot for the 2018 Myotonic Dystrophy Foundation’s (MDF) Annual Gala, November 8th – 10th. MDF supporters from Hawaii and the mainland came together for three days of fun activities, including:

MDF 2018 Board and Community Leadership Summit

MDF holds an offsite planning meeting in January every year to look at the Care and Cure landscape for myotonic dystrophy. The annual goals are to identify urgent and high-impact opportunities to improve the quality of life of every person living with this disease while continuing to accelerate the search for therapies. 

Made to Measure: Developing Clinical Tools to Capture the Severity and Progress of DM

Learn more about Dr. Ami Mankodi, principal investigator at the National Institutes of Health’s (NIH) National Institute of Neurological Disorders and Stroke (NINDS) in Bethesda, Maryland. Dr. Mankodi has been involved in research that has helped shape a fundamental biologic and molecular understanding of myotonic dystrophy (DM).

DM Highlights at American Academy of Neurology Annual Meeting

MDF staff recently attended the 2017 annual meeting of the American Academy of Neurology, in Boston, MA. Here are highlights from that meeting.

DM Voice of the Patient Report Submitted to the FDA

MDF held the first myotonic dystrophy (DM) Patient-Focused Drug Development (PFDD) meeting with key senior leaders from the Food and Drug Administration (FDA) as part of the 2016 MDF Annual Conference in September 2016.

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