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Ohio to Begin Screening Newborns for Duchenne
PPMD is excited to announce another significant milestone in Duchenne newborn screening: Ohio will be the first state to screen all babies for Duchenne! More than 129,000 babies are born in Ohio every year, and the state expects to identify 35 babies with Duchenne annually. Ohio was the first state, followed by New York and…
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PPMD Celebrates 30th Anniversary with Launch of PPMD Together Meeting Series in Cincinnati, Ohio
PPMD is excited to mark its 30th anniversary at the launch of the PPMD Together meeting series, taking place April 19-20, 2024, in Cincinnati, Ohio. Founded three decades ago by a small group of passionate parents and grandparents within the Duchenne community, PPMD has grown into a beacon of hope, driven by the unwavering dedication of parents, families,…
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2-year EDG-5506 treatment helps preserve motor function in BMD
Oral treatment with EDG-5506, now known as sevasemten, continued to stabilize muscle function after two years in men with Becker muscular dystrophy (BMD) taking part in a Phase 1 trial. That’s in contrast to the progressive deterioration of motor function seen during the natural course of BMD in the absence of treatment. According to Edgewise Therapeutics, the…
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Planning for a tornado emergency with 3 sons who have DMD
It’s now tornado season here in Nebraska, which is part of the U.S. Tornado Alley. I could write a column about Duchenne muscular dystrophy (DMD) being like a tornado in the way it came tearing through the life we’d established when my three sons — Max, 18, Rowen, 15, and Charlie, 13 — were diagnosed.…
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Things I’ve gained while living with Duchenne muscular dystrophy
As my time with the assistance dog charity I work for comes to an end, I’m seeking opportunities to occupy my time and keep me meaningfully engaged. At the same time, I’m looking forward to discovering other means of employment to ensure that I realize my goal of self-reliance and financial self-sufficiency. This includes covering…
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Volunteer Opportunities
Champion Volunteer Job Board Welcome to the CureDuchenne Champions Volunteer Opportunities board! Here, you can explore a range of rewarding volunteer positions dedicated to supporting individuals and families affected by Duchenne muscular dystrophy. Whether you’re passionate about fundraising, advocacy, event planning, or community outreach, there’s a role for you to make a meaningful difference in…
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15th Annual Champions to CureDuchenne Raises over $385,000 to Fund Duchenne Muscular Dystrophy Research
“Disco For Duchenne” Gala Featured Dancing, Drinks, a Culinary Experience and More to Help Advance Research for the Rare Disease AUSTIN, Texas., April 16, 2024 – CureDuchenne, a leading global nonprofit focused on finding and funding a cure for Duchenne muscular dystrophy, and the Revell family of Austin hosted the 15th annual fundraiser gala, Champions to…
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Antioxidant supplement in FSHD helps muscle strength, life quality
Treatment with an antioxidant supplement led to improvements in muscle strength and quality of life for people with facioscapulohumeral muscular dystrophy (FSHD) in a small clinical trial. The use of such supplements was particularly seen to improve the muscle quality of patients’ quadriceps — a group of muscles found on the front of the thigh.…
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Edgewise Therapeutics Announces Positive Two-Year Topline Results from ARCH Study of EDG-5506
Edgewise Therapeutics, Inc., has announced positive two-year topline results from the ARCH open label study of sevasemten (EDG-5506) in adults with Becker. Sevasemten is an orally administered small molecule inhibitor designed to prevent contraction-induced muscle damage in dystrophinopathies, including Becker and Duchenne. Results showed that during two years of sevasemten treatment, participants’ North Star Ambulatory…
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Here’s How You Can Drive with a Disability
If you have a desire to drive with Duchenne muscular dystrophy or be a passenger in a wheelchair-accessible vehicle, there are plenty of opportunities to make that dream a reality. This blog post can help guide you through the complexities of finding funding for an accessible vehicle and adaptive driving aids, evaluating the needs you…
