Over the last six months, our new CEO had the privilege of speaking with hundreds of stakeholders throughout the DM ecosystem. Through these discussions, a clear pattern emerged that the adoption of the shortened name “Myotonic” was not having the positive impact intended.
Edward “Bud” Ingraham was serving as a U.S. Army intelligence officer stationed in Nuremberg, Germany when the Berlin Wall fell in 1989. During the time he and his wife Bethany spent in Europe, they developed a taste for travel. But in 1992, at the age of 32, doctors diagnosed Bud with myotonic dystrophy and the army discharged him.
Community advocate Suzette Ison recently participated in the evaluation of research applications submitted to the Peer-Reviewed Medical Research Program (PRMRP).
Our industry partners working towards therapies and a cure for myotonic dystrophy are interested in learning more about our community. They hope to connect with community members via one hour video calls to help evaluate their research strategies.