Myotonic Dystrophy: Family Stories

Lucie Griffiths: Community Moderator Q&A

Published on Fri, 07/17/2020

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.

A Mother's Story - Elizabeth Florence

Published on Fri, 06/19/2020

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."

The Herbert Family's Journey

Published on Tue, 05/05/2020

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.

Cycling to Drive Awareness and Hope

Published on Thu, 03/07/2019

It was more than five years ago when Jeremy Kleiber went to check on a friend who wasn’t answering his found. He discovered his friend’s body with the man’s three-year-old daughter on his chest, crying for him to wake up.

Helping Herself by Helping Others

Published on Thu, 12/06/2018

When Suzanne Perkins’ 16-year-old daughter Eliza had trouble opening jars and closing car doors, she took the teenager to the doctor, confident she would pin the problem on too much texting. But when her doctor sent her to a neurologist, Eliza’s diagnosis came quickly and with a wallop.

For Israel Dubin, Living with DM2 Is A Matter of Perception

Published on Thu, 11/01/2018

Ask Israel Dubin about himself, and he’ll tell you he’s a Jewish, 65-year-old retired judge, father of three wonderful adult children, and husband to a great wife. What he’s likely not to mention is that he has myotonic dystrophy type 2 (DM2).