Myotonic Dystrophy: Family Stories

Cecilia's Story: A Caregiver's Perspective

Published on Fri, 07/12/2013

Though their journey has been bumpy, and at times scary, Cecilia Stearns, Danielle and the twins, Matthew and Jonathan, are finding their way by seeking out the support and services they need and learning to take life one day at a time.

Saurabh's Story: Staying Positive, Staying Active

Published on Tue, 06/11/2013

Saurabh Rai, a San Francisco-based research analyst, has always been active and physically fit. So when he began experiencing mild myotonia several years ago, he didn’t take it too seriously. By 2009, the myotonia had gotten worse, despite the fact that he was exercising a lot.

Shannon Lord: In Memorium

Published on Thu, 06/06/2013

Shannon Lord, MDF's founding chairman, passed away on June 4, 2013. Shannon had a mild form of DM1 and her two grown sons have childhood-onset DM. She was a compelling speaker, advocate, and fundraiser for the myotonic dystrophy cause, and was responsible for the participation of American family members at the International Myotonic Dystrophy Consortium in 2005 from which MDF evolved.

Renee's Story: Discovering Her Life's Path

Published on Wed, 05/15/2013

Renee Bux, now 17, was adopted at the age of three months. Her mother, Joy, recalls that, although they knew their baby had a slow start, “We had fallen in love with Renee, and knew immediately that she was part of our family."

Team Champions Inclusiveness through Athletics

Published on Tue, 03/19/2013

Nicholas Stone loves playing basketball and is a valuable member of the team at Deep Run High School in Virginia. Although Nicholas has DM, his diagnosis doesn’t prevent him from participating.

Muscles for Myotonic: In Memory of Anna Bormann

Published on Fri, 01/25/2013

I am Kelly Bormann. I live in Overland Park, Kansas and am married to Steven Bormann. We have 3 beautiful children. Reed (4), Adalyn (2) and our little angel Anna who passed away when she was 6 weeks old. Anna is the reason for this 5K walk called Muscles for Myotonic.

A Diagnostic Odyssey

Published on Thu, 08/30/2012

I'm Erica Kelly and I live in Mill Valley, California. I'm married to Jeremy, and we have two boys, Jack and Ben, who are 12 and 14.

A World Without DM

Published on Thu, 08/30/2012

My name is Eric Wang, and it's an incredible honor for me to serve as an advocate for myotonic dystrophy, both as a researcher who studies myotonic dystrophy, and as a person who grew up seeing the effects of DM every day.

Josh's Glass is Half Full

Published on Thu, 06/21/2012

I’m Josh Crowder. I’m 21-years-old. I live in West Jordan Utah. I have myotonic muscular dystrophy Type 2 and I’ve had it since birth, which a lot of people find unbelievable.

The Gunderson Family

Published on Tue, 04/24/2012

When Ed Gunderson and his wife, Alice, first got Ed's diagnosis, they did not know anyone else living with the disorder. That would soon change.