Year End Message from Our CEO

Published on Sat, 12/19/2020

Dear MDF Community,

On behalf of the MDF Board of Directors and staff, I would like to thank you for helping make 2020 a triumphant year. During a year full of surprises and unknowns, when it is easy to recall the challenges we have all experienced, I am especially proud of the major transitions we have made together. Our community has shown incredible resilience, innovation, and flexibility.

Instead of scaling back services in 2020, you helped MDF advance both the care and cure sides of our mission. Without your flexibility and willingness to embrace new technology, we would not have been able to shift to virtual support groups, a completely online international conference, or even a virtual gala that blew our expectations out of the water. I offer my sincere appreciation for helping ensure MDF could sustain funding for projects and research that serve to improve quality of life and move us closer to treatments and a cure for myotonic dystrophy.

Thank you for partnering with MDF, and each other, to help exceed everyone’s expectations of what was possible in 2020! Here is a snapshot of what we accomplished this year:

  1. Published eight sets of new guidelines and recommendations!
  2. DM gene editing and natural history research continued to move forward!
  3. Completed Financial Resources guides for all 50 US states!
  4. Added dozens of hours of new videos and presentations to the Digital Academy!
  5. Transitioned to virtual Support Group meetings – special thanks to our fantastic facilitators!
  6. COVID-19 Respiratory Recommendations were published!
  7. Completed a 10-week Friday Afternoon Webinar Series!
  8. Provided the first MDF Virtual Conference – with more attendees from more countries than ever before! 
  9. Held our most spectacular Gala ever – in a one-hour virtual format!
  10. Grassroots fundraising increased instead of decreased – what a tribute to the strength of our community!
  11. MDF maintained research fellowship and grant funding – which will INCREASE in 2021!
  12. Introduced Strength Training sessions!
  13. Successfully advocated for the passage of a congressional bill that directs the National Institutes of Health to make recruitment of new DM researchers a high priority!
  14. Relocated the MDF office to an accessible building at half the cost of our previous location!
  15. “Refreshed” our brand – returning to the Myotonic Dystrophy Foundation & updating our logo!
  16.  Continued to provide support through our Warmline! Calls to the Warmline have more than doubled since the beginning of the pandemic!

And 2021 is set to introduce more new programming and research opportunities, including:

  1. Meet-the-DM-Drug-Developer Series – where you can ask the drug developers about their progress!
  2. Ask-the-DM-Expert Series – where you can ask the experts all the questions you have!
  3. Five new Research Fellowships offered!

Defying the odds of 2020, the strength of MDF lives in the love of our community.

From our family to yours, happy holidays and we look forward to a brighter and safer 2021,


Tanya Stevenson, EdD, MPH
Chief Executive Officer