“I have CMT, but CMT Doesn’t Have Me”
By Rep. Dusty Johnson
Click here to watch Serena’s story.
Every year, thousands of advocates from across the country travel to Washington, D.C., to meet with their representatives. On any given week when Congress is in session, I hear from a number of groups from South Dakota— the topics can vary from tribal issues to health care or community banks and tax issues.
I appreciate every South Dakotan who has made the trip to Washington since I was sworn in this January. Coming to Capitol Hill to advocate for your cause is a worthy mission. These meetings help elected officials, including myself, make many tough decisions. In fact, several of the meetings I’ve taken have also resulted in a bill introduction later on.
However, I also recognize making the trip to Washington isn’t easy for most. It’s a long flight and there’s no denying how expensive it is to fly across the country, stay in a hotel, and take days off work. That’s why when I saw Serena’s story in the Vermillion Plain Talk, I knew I should go to her.
Serena Clarkson moved to Vermillion to be closer to her doctors. She suffers from Charcot-Marie-Tooth disease (CMT), a neuromuscular disease where the body creates too much protein, causing chronic pain for nearly one in every 2,500 individuals. Serena has undergone 79 surgeries since 2010, but unfortunately there is no cure for CMT – yet.
Despite her diagnosis, Serena wants to advocate for others, in hopes that one day there will be a cure for diseases like CMT. That’s why she started raising funds to travel to Washington with the Muscular Dystrophy Association to advocate for newborn screenings and accessible travel for people with disabilities.
When I heard that Serena hadn’t yet raised enough funds to go on the trip to D.C., it was important for me to meet her in person. I had the opportunity to sit down with her this week at the Bean in Vermillion. For people with CMT, every step can feel like a stabbing knife. But Serena said it best, “I have CMT, but CMT doesn’t have me.” Despite her own pain and obstacles, she’s focused on helping others. Serena understands there may not be a cure in her lifetime, but she wants to see one for future generations.
Serena has risen above many trials – she endured abuse at home as a child, overcame addiction to drugs and alcohol, and lives every day with CMT. She’s been knocked down a lot in life, but she’s gotten up every single time. She’s the kind of advocate that inspires change and action – her story is one that inspires and motivates. It’s the kind of story that should remind Congress why we need to do our jobs.
I’m grateful Serena was willing to share her story, and I hope next year she can spread the word about neuromuscular diseases in our nation’s capital.
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Swing and a miss; this was awful.