What It Was Like to Go to the Myotonic Dystrophy Foundation Conference

This is my brother Dustin. He was born with congenital myotonic muscular dystrophy.

boy with congenital myotonic muscular dystrophy.

He inherited myotonic muscular dystrophy from my mother, Jo Lyn. She had adult onset myotonic dystrophy.

woman with adult onset myotonic muscular dystrophy.

My brother lived 13 years and my mother, 51. I did not inherit from my mother and live a “genetically typical” life with my husband and two children. However, there is a beautiful story in the life of my brother and mother, and I’ve spent almost the last five years working to share it.

book called 'from my mother'

From My Mother” was released March 29, 2016. In September, I took my story to my first Myotonic Dystrophy Foundation conference in Washington, D.C. and shared my family’s stories with the myotonic dystrophy community.

woman and friend at conference Me and friend Mindy Kim

I got to share “From My Mother” with women affected by the same rare genetic disease as my mother.


I got to speak with multiple senate health policy advisor staff and leave a copy of “From My Mother” with Senator Pat Roberts.

I got to talk with people I look to as heroes, medical researchers searching for a cure, including a special one, Eric Wang, who is the child of a father who has myotonic dystrophy and the sibling to an affected brother.

people at conference

In fact, the medical myotonic dystrophy community showed so much support for a first-person family narrative that follows the full life arc of a child affected with congenital myotonic dystrophy and a woman affected with adult onset from diagnosis to death that “From My Mother” went home to six different countries after the conference.

I formed lifelong friendships with people I care about and hope my story helps, like my roommate Tina, a woman who works hard to raise her children and take care of herself while affected by myotonic dystrophy.

I got to see medical researchers dance right along side their patients.

researchers and patients dancing

I shared “From My Mother” with MDF board members like Jeremy Kelly, a husband, brother-in-law and father of loved ones affected with myotonic dystrophy.


I got to talk “shop talk” with a friend affected by myotonic dystrophy type two and in the final stages of finishing a book about his own life story.

two friends smiling
I got to browse top research by young medical professionals budding into the next great grant proposal or research projects for the myotonic dystrophy community.

research board

I got information about a brain study looking for participants from families affected by myotonic dystrophy and have a stack of paperwork coming in the mail to look over.

t shirt

I got to listen to highly influential individuals like Dr. Stephen Katz, Director of The National Institute of Arthritis and Musculoskeletal and Skin Diseases, speaking at our congressional briefing on myotonic dystrophy research funding.

Dr. Stephen Katz

I got to hear stories from people I hope read my story. I got to listen to people who had read the story tell me how it helped them understand something about human nature and disease…

people at lunch

I got to cry over a video about heroes in the myotonic dystrophy community and realize how special the people involved here are, how each person matters, and how each life counts. I got to feel validated in childhood experiences that before I felt so alone in, supported in my passion to care about a rare disease, and connected to people in families like mine. I got thanked by a mother for writing my book because she read half of it overnight and was going to finish on the plane home… I got to hug a woman who said, “Thank you for sharing your story, because it’s our story.” I could name some authors who actually make money in writing a book, but how many writers actually get that? I completely sold out my book stock at the conference (and should have taken more…), but I did a little better than break even, and that’s only because I had a roommate split the hotel cost with me. However, I found readers with whom I belonged, an audience that deserved a book about a family like theirs when one quite like it didn’t exist before, doctors who wanted the book to share with families in Italy or Sweden, and researchers who wanted the book because it would make the data points more human, more meaningful…

This trip was part of my purpose, part of what I’m meant for, part of what makes me human, and part of what connects us all – it was a trip to share my voice in this montage of the human story with others willing to share their own. Next year the Myotonic Dystrophy Foundation‘s annual conference is in San Francisco, and it is supposed to be twice as big in attendance. I’m already making plans. And on the plane ride home, I wrote the first few pages of my next book… God bless those who hope. There’s humanity in that.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Myotonic Muscular Dystrophy

Super food diet selection in wooden bowls.

Viewing Food as Medicine to Help My Myotonic Muscular Dystrophy

The advent of autumn ushers in not just a chilly breeze, beautifully colored leaves, and the smell of wood-burning fires. It’s the season where food and drink consumption kicks it up a notch or two. It’s always been my favorite season — the pumpkin this or pumpkin that, yummy stuffing with gravy, and the variety [...]
Close-up of people communicating while sitting in circle and gesturing

When I Was Asked to Lead My Chronic Illness Support Group

When I was diagnosed with myotonic dystrophy, I don’t remember hesitating before making my way to a support group meeting. I didn’t have preconceptions; all I wanted to do was meet others with the condition. The meetings I went to were for anyone with a neuromuscular disease, not just myotonic dystrophy. We met at a hotel in a conference [...]
Young woman sitting on grass in sport clothes, cityscape in background

6 Self-Care Tips for Living With Myotonic Dystrophy

Myotonic dystrophy (DM) is a multi-systemic condition. There are literally hundreds of potential symptoms a person may experience, but thankfully few people experience all of them. Three of the most common symptoms are fatigue, gastro-intestinal complications and dysphagia (difficulty swallowing). Two years ago I was invited to make a presentation at Stanford University’s Annual DM Information Meeting on Adults Living with [...]
blur abstract people background

What You Don't See in My Life With Myotonic Dystrophy

Many of us with myotonic dystrophy type 1 (DM1) have a look. I didn’t have the look when I was first diagnosed in my mid-30s, but over the last 18 years I’ve lost facial muscle tone as well as a lot of weight. Because of my foot drop, my gait is affected. I move slower than my unaffected peers. [...]