Coronavirus & Myotonic Dystrophy

The Myotonic Dystrophy Foundation (MDF) is concerned that the new coronavirus (COVID-19) may have a disproportionate impact on people and families affected by myotonic dystrophy. Experts have shared that COVID-19 can cause lung and heart complications, which is of significant concern for those living with myotonic dystrophy. The number one thing you can do right now to stay healthy is avoid exposure to the virus and follow the CDC guidelines. Please contact your clinician if you begin to feel ill.

COVID-19 Vaccines and the DM Community

Do you have questions for DM doctors and therapists? Join a panel of experts including Drs. Robert J. Graham, Ami Mankodi, Oscar H. Mayer, and Aruna Subramanian for an “Ask-the-Expert” session on COVID-19 & Vaccines. After the success of the Stump-the-Doctor session at the 2020 Virtual MDF Conference, MDF has created a series using the same format to connect families and DM experts.

Watch the Recording!

In response to the many questions received by MDF regarding the COVID-19 vaccines, MDF’s medical advisory panel has prepared the following FAQs. We encourage you to share the FAQs with your friends and family in the DM community. As new information becomes available, MDF will share additional vaccine considerations. Click here to view the COVID-19 Vaccines: Frequently Asked Questions.

Want to learn more about mRNA vaccines? Dr. John Lueck, a 2009 MDF Research Fellow and current Assistant Professor at the University of Rochester Medical Center, recently gave an interview discussing the science behind mRNA vaccines and how they are being utilized to fight the COVID-19 Pandemic. Click here to read the full interview with Dr. Lueck curtesy of SF Quarantine.

Recent Communications from MDF

MDF thanks each of you for engaging in social distancing practice and following CDC guidelines to help protect yourselves, your families, and our most vulnerable community members, including those living with myotonic dystrophy. Please know that the entire extended MDF team is with you in spirit, we are in this together, and we are sending you our very best.

Virtual Support Options

Our in-person Support Groups have been canceled worldwide until it is safe to reconvene them. However, we recognize the vital importance of support groups, especially during this uncertain and sometimes stressful time. In lieu of in-person groups, we have added, and will continue to add, additional phone, virtual, and Facebook support groups as facilitators are available. Find more details on our virtual support options here.

Respiratory Care Recommendations

We understand that this is a very challenging time and we would like to provide tips for patients, caregivers, and medical providers on the use of noninvasive positive pressure ventilation (NIPPV) if you have been exposed to this virus or have symptoms of COVID-19 infection.

Coronavirus Aid, Relief, and Economic Security (CARES) Act

MDF has reviewed the Coronavirus Aid, Relief, and Economic Security (CARES) Act signed yesterday and has identified sections that may be especially relevant to the myotonic dystrophy community. This document includes information about health care, including payment for COVID-19 testing and future vaccines, as well as unemployment insurance, emergency leave, K-12 education and IDEA, cash payments, housing, and more.