In June of this year, MDF initiated a new program called "MDF DM Days" to bring together clinicians, researchers and myotonic dystrophy (DM) family members, and provide close-to-home access to educational sessions. The one-day events offer opportunities for the community to meet local regional clinical staff, hear first-hand research updates and learn more about DM disease management. Additionally, the events provide opportunities for community members to network with other families and learn information about MDF and its resources.
MDF held the first MDF DM Day on June 10th at the University of Iowa with the help of the university’s myotonic dystrophy clinic. The event featured more than a dozen expert clinicians who specialized in different types of care for people with DM. General and breakout sessions at the event explored cardiology, sleep, cognitive changes, palliative care, physical therapy and occupational therapy.
Our post-conference survey indicated that the talks on genetics and clinical care through life were especially well-received. One community member had this to say about the event, “I am so glad I got to go. I had the opportunity to ask a ton of questions and everyone was very patient with me. I also had the chance to chat with several other attendees, which was lovely. And, of course, I learned a lot. I'm so glad MDF had this.” We’re glad they attended MDF DM Day!
MDF is planning its next MDF DM Day on Saturday, July 22nd, in Kansas City, Missouri, in conjunction with the clinic at the University of Kansas. The format will be very similar to the event previously held in Iowa, with general sessions followed by breakout sessions after lunch. Discussion topics at the event will include cardiac health, sleep management, physical therapy, and DM research, just to name a few. If you are in the area, register for the event. We’d love to see you there!
Our final MDF DM Day this year will be held in Orlando, Florida, on October 21st with the University of Florida. Save the date on your calendars and we hope to see you soon. We’ll share news about upcoming MDF DM Days in the Dispatch newsletter.