Home / Connect / Stories

Stories

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

A decade after their son Jack's DM diagnosis, Kristen Vassallo and John Fitzpatrick are active in efforts to educate others about the disease, and the message they preach from their experience is one of hope.

From coping to community engagement, the Korsgaard family has found strength in the MDF community and approaches life with love and enthusiasm.

Belen Esparis uses her medical expertise to help her daughter Emily navigate life with DM. "I just want her to keep trying," she says. The Esparis-Kugler family has raised more than $35,000 for MDF and DM research since they learned about the disease.

An active MDF advocate, fundraiser and community member, Teresa Schmertman shares her approach to life and living with DM. "It's about a passion for the cure," she says, "second only to my passion for my family."

Mike and Dean Sage, two brothers who are both living with DM, lean on each other and their family for support. They approach life differently than most people their age: although they are optimistic about their future, they now focus on living in the moment.

Alain Geille, one of the organizers of IDMC-10, brings a real understanding of DM to both IDMC and the Association Française Contre les Myopathies, as both his son and wife are living with DM1.

Sarah Berman and her daughter Zoé embrace the challenges they are faced with, and find strength and support from the MDF community.

Meet Larry Lord, architect and community volunteer living in Atlanta, Georgia, who is a single father of two grown sons living with childhood-onset DM.

Three years ago, Sarah and Sam Pontifex of Adelaide, Australia, had never heard of myotonic dystrophy, but their three children were experiencing shared symptoms that they knew could not be the result of mere coincidence.

Partners

© Myotonic Dystrophy Foundation. All rights reserved.