“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 CureDuchenne: Disco for Duchenne, on April 6, 2024. The event raised $385,000 to benefit CureDuchenne as it accelerates scientific research and pioneers educational programs to care for families affected by Duchenne, a pro ..read more

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 the lives of those living with Duchenne. Join us in our mission to accelerate research, raise awareness, and provide vital resources. Browse our listings and become a Champion for a Cure toda ..read more

Edgewise Therapeutics Announces Positive Two-Year Topline Results from the ARCH Open Label Trial of Sevasemten (EDG-5506) in Adults with Becker Muscular Dystrophy (Becker) – The North Star Ambulatory Assessment (NSAA) remained stable relative to declines reported in Becker natural history studies – – Significant decreases were observed in circulating levels of creatine kinase (CK) and fast skeletal muscle troponin I (TNNI2), biomarkers associated with skeletal muscle damage – – Sevasemten was well-tolerated – – Edgewise leadership to discuss ARCH findings on Tuesday, April 16 at 8:30 a.m. East ..read more

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 have for transportation, and searching for the right car. With time and effort, there’s no doubt you’ll be in the driver’s seat.     While plenty of wheelchair-accessible vehicles and adaptive driving technologies exist, the cost can be prohibitive ..read more

Dealing with a fracture is a frightening experience for anyone, especially someone living with Duchenne muscular dystrophy, who has weaker bones and is more prone to falling.   Often, you will have to work with emergency room staff who aren’t as familiar with Duchenne and don’t know the signs of fatty embolism syndrome (FES). Then you, along with an orthopedic doctor, will need to decide whether to surgically or non-surgically fix the fracture.   Because an emergency like this can happen in an instant, we want to help you be prepared. Remember the acronym, “R.A.R.E”: Ready ..read more

Southern California’s Premier Wine Event Brings Together Acclaimed Napa Valley Vintners    Under One Roof to Raise Funds for CureDuchenne    NEWPORT BEACH Calif., March 8, 2024 – Marking a significant milestone, Napa in Newport benefiting CureDuchenne will commemorate its 10th anniversary on April 20, 2024, at the luxurious Pendry Newport Beach. Esteemed for its unparalleled selection of Napa Valley’s finest wines, this year’s gala is a celebration of a decade-long journey of philanthropy, community, and exquisite wine. The gala showcases a Grand Tasting, dining tables hosted by vint ..read more

This past year the CureDuchenne Clinic at the Neurology & Neuromuscular Care Center, led by Dr. Diana Castro in Denton, TX, has been marked by unparalleled advancements, notably with the administration of the first gene therapy for Duchenne muscular dystrophy. The CureDuchenne Clinic has shown the power of care — not just medical care — but the personal care of the doctors and clinicians who empower patients with Duchenne to live a high-quality life. These past 12 months have been a testament to that power.  The CureDuchenne Clinic offers care to uninsured and underinsured individuals ..read more

Please join us for a session with ITF Therapeutics. Meet members of the ITF Therapeutics team to learn more about their organization and next steps to support the availability of DUVYZAT.  Recorded Tuesday, April 2, 2024 Watch Recording The post CureDuchenne Webinar with italfarmaco | Community Update with ITF Therapeutics: Introducing DUVYZAT™ (givinostat)  appeared first on CureDuchenne ..read more

By Jennifer Wallace, PT and Doug Levine, PT  Introduction   Duchenne muscular dystrophy (DMD) is a neuromuscular disorder that affects an estimated 1 in 5,000 live male births and is largely characterized by progressive muscle weakness. DMD itself, and even some of the current medical treatments, present challenges beyond muscle weakness. One that we have recently taken an in-depth look at is the risk of bone fractures. Among these, femur fractures are of particular concern due to their potential to cause someone to lose their ability to walk. The CureDuchenne physical therapy t ..read more

Going to college can be a life changing experience – from meeting new friends to expanding your knowledge to learning more about yourself. It can also be especially challenging while living with a rare condition like Duchenne muscular dystrophy. That’s where these scholarships aimed at individuals with Duchenne and those with other disabilities can come in, like those listed below. They can provide extra financial support to help you achieve your educational dreams after high school. There are thousands of scholarships out there, and tools like Big Future from the College Board, Bold.org, and ..read more