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

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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 conferenceMe 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.

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Originally published: December 8, 2016
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