Editor’s note: Kate is a young woman from the Boston area who lives with spinal muscular atrophy type 3 and participated in the clinical trial for the first-ever approved drug to treat SMA, Spinraza, a medication that can trace its root back to MDA and its commitment to funding research that will lead to treatments and cures. Muscle Walk is one of MDA’s largest fundraising events, and Kate wrote this letter to encourage supporters to go the distance for MDA via their local walks.
Fourteen years ago, when I was four years old, my parents will recall the worst day of their lives. It was then that they learned of my rare, genetic and, at that time, untreatable disease, spinal muscular atrophy. From there it was a spiral into the unknown, as they had only known of muscular dystrophy through the Jerry Lewis telethons and were anxious with questions about my future and aptitude for a fulfilling life. To ease their minds, my parents were lucky enough to find assistance with the Massachusetts MDA office. Their guidance left my parents with the promise that despite my disability, I would find success in life, even if I navigated the world from a different perspective.
As I grew older and established my identity, MDA had my back at every step to ensure that I would find confidence in my uniqueness. Because of MDA, I have learned the value of leadership, wearing many hats at my school, in my community and in my hospital without fear of the limitations that my wheelchair presented. I have been graced with opportunities from MDA, whether it be New England Sports Network interviews during Bruins games, a profile on a national telethon, going to MDA Firefighter Bootcamp as a guest speaker, or sitting among Boston athletes at the annual Muscle Team event. Alongside these opportunities were medical investments funded by MDA, such as the MDA Care Center at Boston Children’s Hospital. I was able to receive wraparound care at the MDA Care Center, specifically for spinal muscular atrophy patients.
Being part of the MDA circle has changed my life in many ways, but none more so than being a participant in Biogen’s clinical trial for the first FDA-approved drug to treat SMA, Spinraza. As a type three patient, I found myself walking 50 feet at the beginning of this drug trial, to 400 feet presently. While I know it’s far from a marathon, without Spinraza, the effects of SMA would have been irreversible and only continue to progress as I grew older. MDA has always been a means of assistance, but the ultimate goal is to cure these debilitating diseases. With the investments of MDA in early research of Spinraza, the muscular dystrophy community is within reach of the first cure. I can walk, bike, swim, and occasionally jump because of the research of Biogen and MDA, and because of this, I am proud to support the MDA at this year’s Muscle Walk.
Start your own Muscle Walk team today!