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MDF on the Road

​Throughout the year MDF has dispatched members of the team to local events around the country to raise disease visibility and distribute resources. Here is a recap of the different events we have attended so far this year. There have been more and more of these local “DM Days” popping up in various cities, which helps those who cannot attend a national conference connect with other people who have myotonic dystrophy (DM). You may have run into us at our MDF table and signed up for a MDF Toolkit or received information about the Myotonic Dystrophy Family Registry. Here is a recap of the different events we have attended so far this year.

In January, MDF Program Director Paul Formaker manned a table at the Myotonic Dystrophy Patient Family Meeting in Sacramento, CA, which was hosted by Dr. John Day and Stanford University. The event was well-attended and participants made Paul feel welcome after his first month on the job! He is looking forward to next year’s meeting being held in San Diego on Saturday, January 21st from 9 am to 4 pm. Learn more here.

MDF Project Development Manager Pam Lewis spoke in her hometown of Houston, TX at the Baylor University “Evenings with Genetics” meeting about DM, which took place on October 4th. Her overview of MDF and its impact on families resonated with the 80 people in the audience and helped inspire people to consider relaunching the Houston support group. Pam also participated in the Cincinnati, OH Myotonic Dystrophy Connect & Learn Conference on October 22nd. Families and people living with myotonic dystrophy learned about myotonic dystrophy symptom management and updates on research.

On November 5, 2016, the University of Utah hosted its 2nd Annual Inherited Neuromuscular Disorders Family Conference and invited MDF to give a presentation about ways to get involved in the community. Program Director Paul Formaker really enjoyed seeing all of the community members in attendance, including new faces and old friends. About the event, Paul said “[Meeting with community members] is definitely my favorite part of the job. Getting to interact with the community and share all the support and resources MDF has to offer to improve community members' quality of life is one of the best feelings I know.” We look forward to attending again next year.

Be on the lookout for an event near you coming next year - MDF hopes to attend more of these events in the future and possibly even hold a few of our own. Do you know of any local events related to DM in your area? Please share them with us at info@myotonic.org.





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