Starting in the early 1950’s, when public awareness and understanding of muscular dystrophy was almost non-existent, the Muscular Dystrophy Association created their National Goodwill Ambassador program. Since that time, over 40 individuals have helped bring attention to the fight against muscular dystrophy by sharing their stories of inspiration and hope. Joe Akmakjian is the current ambassador, and throughout 2017 he has worked to raise awareness for muscular dystrophy.
Article reposted with permission from Hope for Gus.
Hikers, outdoor enthusiasts and climbers of all skill levels are invited to join the Everest to End Duchenne team on its second trek to Mount Everest Base Camp on September 25. The 2017 trek is part of a symbolic journey that represents what boys battling Duchenne muscular dystrophy (referred to as both DMD or Duchenne), face every day as their muscles lose function. The effort supports the Hope for Gus Foundation, a non-profit organization that raises funds for medical research for DMD.
The MobilityWorks 1* cycle team will be participating in the Buckeye Break Away Challenge for the 12th year. Though small, they are a powerful force in their quest to beat MS, finishing as a top 10 fundraising team each year they have participated. Collectively, the team has raised over $200,000. For this year’s MS Society ride, they’ve set a lofty goal of raising $25,000 and could use your help. Consider joining them with donation for their ride. Good luck Team 1*!
Ethan Pyles is one of the toughest 14 year olds on the planet! He lives with his mom Sandra and older brother Mitchell in Pennsylvania. At a very young age, Ethan was diagnosed with Duchennes Muscular Dystrophy (DMD), a genetic disorder characterized by progressive muscle degeneration and weakness. There is currently no cure for DMD, but Ethan is playing a huge part in finding one.
Duchennes is one of the most common types of muscular dystrophy. It is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. DMD primarily affects males with symptoms typically starting between the ages of 3 and 5. It is estimated that about 1 in 3,500 boys are born with DMD. Although it is a genetic disorder, Duchennes can develop without any family history of the disease. There are currently several clinical research trials seeking a cure, one of which Ethan is involved in.
The National Multiple Sclerosis Society has had very strong start to the third annual MS Awareness Month. Their “Together We Are Stronger” campaign, a continuation of last year’s theme, encourages people living with MS to share their breakthrough stories. The purpose of this is to show examples of strength and courage to live the best life possible, with the hopes of inspiring the millions of people living with MS.