The deafening roar of thousands of motorcycles is music to Julie Harris’s ears. To her, that rumble means one thing: “Hope.” This weekend, the Reading Fairgrounds in Eastern Pennsylvania will be filled with Julie’s favorite sounds. That’s because the 30th Annual MDA Ride for Life is speeding into town.
Despite the progress in the quest for treatments and cures, individuals living with the life-threatening diseases that newly approved drugs treat are facing a new challenge — gaining access to the approved therapies. Today, some individuals and families are unable to access FDA approved therapies, which can significantly impact the health and life of the person denied access. Not having access to appropriate therapies is unacceptable. A treatment cannot change the lives of families and individuals if they do not have access to it.
Matt wants a bright future for his son. That’s why he started the team Archer’s Way and ran with Team Momentum in the United Airlines NYC Half-Marathon in March. His efforts brought in $55,000 and counting for research that will help find treatments and cures for DMD.
Bryant and Sarah Krieger’s son Fritz was diagnosed with Duchenne muscular dystrophy in February of this year. Less than a month later, their family, along with dozens of other supporters, were walking to bring strength to life at the Muscle Walk of Phoenix as part of Team Fritz & Friends. Here, on Fritz’s first birthday, Sarah allows us a glimpse inside her thoughts by sharing these emotional and moving entries from her journal.
MDA Shamrockstar Jordy shares the importance of MDA Shamrocks, what he wants to be when he grows up and why he loves attending MDA Summer Camp.
Vamorolone (formerly VBP15), under development by ReveraGen BioPharma, has received FDA Fast Track designation for the treatment of DMD.
Akashi Therapeutics announced that the FDA has cleared the way for the company to resume clinical development of HT-100 in boys with DMD.
Do you ever find yourself saying, almost by default, “I’m tired” when someone asks you how you are doing? Jennifer Massey has more reason than most to respond that way. As a manifesting carrier of DMD, she is often fatigued. But she wants to be more mindful of how she talks about her health.
Thirteen-year-old Garin, who lives with DMD, has a positive attitude that helps his family give him the best life possible. That includes one day becoming an architect who designs buildings for people who use wheelchairs. But first: MDA Summer Camp!
Over 500 of the sharpest minds in research have gathered at MDA’s Scientific Conference as they work to unlock the secrets of neuromuscular diseases.
