Susan Aumiller’s story begins with a dream. She and her husband, Bob, made it a goal to visit every national park in the United States. About halfway through the journey, Bob received a harrowing diagnosis. An incurable form of muscular dystrophy made it increasingly difficult for him to walk. The news came shortly after the couple learned that their son had the same condition. As a result, Susan took up the cause. She organized the first Columbus-area Walk and Roll to Cure FSHD. Keep reading to learn more, or follow the original story here for more information.
What is Muscular Dystrophy?
Muscular Dystrophy (MD) encompasses a group of over 30 genetic disease. As a group, forms of Muscular Dystrophy are characterized by progressive weakening and deteriorating skeletal muscle. The degeneration of skeletal muscle greatly affects motor control and movement.
The specific form of MD Bob and his son experience is known as FSHD or Facioscapulohumeral muscular dystrophy. FSHD primarily affects the muscles of the face, shoulders, and upper arms. Other muscle groups may be affected as well, but progression is less severe than in the primary groups.
Facial weakness is the most common and pronounced symptom of FSHD. Abnormal signs of musculature in the shoulders is also common due to muscle weakness. FSHD patients may also experience abnormalities in the retina, and weakness in abdominal muscle groups. No cure for any form of muscular dystrophy currently exists.
Like a Tornado
Spinning. That’s how Susan describes the change in her world. Like a tornado, she says. Rather than accept life as a natural disaster, Susan began to learn everything she could about muscular dystrophy. This led her, in turn, to create the Columbus-area Walk & Roll to Cure FSHD. The event aims to raise both awareness and funds for FSHD causes. Primarily, funds will go to the FSH society. FSH society intends to find a cure for FSHD by 2025. Some successful research has already been completed in mice. Using virus-delivered microRNA, researchers successfully knocked out muscle-destroying genes. There is confidence it will translate well to humans but more testing needs to be done.
Susan isn’t alone in her effort to make a difference. Part of the idea for her event came from a call by FSH Society to create “an army of activists.” Susan Aumiller leads the Columbus chapter of the society, which is on of 13 nationwide chapters. At last count, the Walk & Roll event had raised over $75,000 towards its $100,000 goal.
Susan still finds it challenging that no matter what she and her family do, their health is not wholly up to them. She says they have always practiced healthy living. Now they face something beyond their control. Still, she is determined to do everything possible to save those she can and give them the best life possible.