The Muscular Dystrophy Association (MDA) held their annual MDA Muscle Walk Saturday morning Sept. 7 at Sikes Lake Center as a way to raise funds for muscular disease research and provide resources for families dealing with muscular diseases.
“The Muscle Walk raises awareness and empowers families by reaching out to friends and members of the community to come and be a part of their team and give back,” Executive Director of MDA Lori Seymore said. “They are able to designate the money they donate to research for a specific disease that may be in their family.”
The Muscle Walk is a mile-long walk made up of multiple teams of friends and families. This year included 18 teams participating within the walk. Anyone was welcome to walk, as it is not required to donate, although it is encouraged. With this year’s walk, the MDA raised a total of $18,400 of funds that will go to research for multiple kinds of muscular diseases.
Due to the MDA’s ability to provide funding into research thanks to events such as Muscle Walks all around the U.S., as of Sept. 19, there has been accelerated approval to begin conducting clinical trials on Eteplirsen. This would be the first disease-modifying drug on the market in the United States to treat Duchenne Muscular Disease (DMD), an inherited disorder of muscular weakness, as well as other muscular diseases. Approximately 13 percent of DMD patients may be eligible for the trial.
“Today has been a long time in the making. This is the outcome MDA dreamed of 25 years ago when we were the first to invest in the breakthrough research that led to development of Eteplirsen. Throughout this process we have seen the undeniable strength of our community to rally behind MDA’s commitment to find treatments for our families. This is an important victory, and we are honored to stand shoulder-to-shoulder with everyone who has fought to make this day a reality,” MDA President and CEO, Steven M. Derks, said.
The MDA is also a major resource for many families struggling with muscle disease. Heather Johnson, a participant in the walk and mother of 2-year-old Eve, who has a muscular disease comparable to ALS, and how the MDA has been a resource for her and her family.
“MDA has been a huge part of our life since Eve was diagnosed. Someone from MDA is at every doctor’s appointment that we go to, the local MDA has been available at any time. Whenever I have any questions about equipment or anything, they’ve been there to support us or help us,” Johnson said.
