Myotonic Dystrophy: Family Stories

Written by his son, Dr. Eric Tzy-Shi Wang (王滋熙). My dad had lived with symptoms of myotonic dystrophy for over 30 years. After college, with the encouragement of friends and colleagues, I decided to focus my training and career on better understanding the molecular mechanisms of DM, and it had always been an ambitious goal of mine to find a medicine for my dad. Thus, my dad’s journey ultimately served as a guidepost and motivating factor for my life’s work.

It would be challenging to exist among the fast-paced lifestyle of Manhattan and surrounding boroughs. That is why it is important, especially as a person living with DM, to have support. One place we can seek out that mutual aid is within a support group. And in New York City, look no further, because Glenda, Guillermo, and Jan are the team of cheerleaders you need in the Big Apple. 

Consciously dedicating hours of their week to support the myotonic dystrophy community, these support group facilitators have decided that they have a higher capacity to contribute. I am quite consistently taken aback by people like Jodie Howell and Samantha Welsh, who are actively involved in their own communities, but have determined that they have a greater threshold to give.

In 1991, Peter Ingraham was an avid guitarist until he started experiencing weakness in his left index finger. At the time, he had recently completed his master’s degree and was working in Daytona Beach, FL as a computer engineer. After he sought medical attention help for what seemed to be a minor issue with his finger, Peter was diagnosed with myotonic dystrophy type 1 (DM1) at 30 years old.

MDF's Health Resources Coordinator, Ruth Sheldon, sat down with longtime volunteer and new MDF Support Group Facilitator, Sarah Berman. After reading Sarah’s family story on the MDF website, and the blog dedicated to her daughter Zoe’s experiences with congenital myotonic dystrophy (CDM), it was clear that Sarah had a great capacity to engage others. It seems so fitting that Sarah should be the facilitator of the CDM support group!

MDF is excited to announce Tom McPeek's appointment to our Board of Directors! Tom has been an active member of the MDF community for over 10 years. Find out more about Tom, his family, and his work in the DM community.

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.

It all started with the birth of my first and only child in 2007 at age 26. I noticed that my arms hurt constantly holding my newborn child, which then progressed to grip myotonia. I had read about myotonic dystrophy on the internet and felt sure I needed to be tested. Many months later, genetic testing proved I had DM2.

Liz Florence lives in Dallas, Texas, with her husband, and two sons, Sam, 18, and Will, 20. Sam was born with Congenital Myotonic Dystrophy. Will is unaffected by Myotonic Dystrophy (DM). "I feel very lucky because my husband and I are healthy and we have the energy and ability to take care of Sam and to be there for our other son, Will."

Myotonic Board Member David Herbert is using his background in business development and new ventures to help forge critical new partnerships for Myotonic. Understanding the economic and social impacts of DM is crucial to getting business working toward a cure.

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