Myotonic Dystrophy Education Network

The Need

There is a crucial need for increased awareness of myotonic muscular dystrophy within the medical community. The average affected individual must wait for over 6 years for a diagnosis.
There is also a desperate need for increased researchers in the field. According to the most recent report to congress on implementation of the MD CARE Act made available by the NIH website, only $6.3 million dollars in NIH funding was provided to DM research, when $17 million was awarded to another form of muscular dystrophy with similar prevalence. This funding is limited only by the number of applications for research grants submitted. Funding really is there for the taking, we simply need more investigators doing more research in the DM field.

The Solution

We can increase both the number of researchers and awareness in physicians across all specialties with one simple solution. Many medical schools have “patient experiences” where an investigator gives an introduction to a disease and their current research, and then a patient (possibly with family) talks about their own experience. Finally, there is an opportunity for the students to ask questions. They get to learn about the disease in ways they never could from a textbook. And it sticks. Dr. Tee Ashizawa was first motivated to join the field of myotonic dystrophy research after hearing a patient with DM speak at his own medical school. Shannon Lord and Dr. Lindon Hopkins are currently doing a similar program annually at Emory University School of Medicine. Our goal is to have educational programs in myotonic dystrophy like this in medical schools throughout the country.

Interested in Participating?

In order for this goal to become a reality, we need your help. We need researchers, physicians, and patients everywhere to volunteer to be part of this network of speakers. Please fill out the form below and we will coordinate with local medical schools and contact you regarding your participation

www.surveymonkey.com/s/XMB6XDM

If we are going to combat this awful disease, we need more physicians and researchers informed and interested. By participating in this educational network, you can make it happen.