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Global Nonprofit CureDuchenne to Host FUTURES National Conference for the Duchenne and Becker Muscular Dystrophy Community on May 21-24 in Orlando, FL
Four-Day Conference Will Feature Leading Experts, Inspirational Speakers,and the Latest Care and Treatment Insights Newport Beach, Calif., April 24, 2026 – CureDuchenne, a global nonprofit committed to finding and funding a cure for Duchenne muscular dystrophy, announced its FUTURES National Conference will be held from May 21-24, 2026, in Orlando, Florida at the JW Marriott Orlando,…
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Comedian Fiona Cauley Shares Humor While Raising Disability Awareness
Stand-up comedian Fiona Cauley has appeared on “The Tonight Show Starring Jimmy Fallon,” toured with Nikki Glaser, and is a regular performer at Zanies Comedy Club in her hometown, Nashville, Tennessee. Fiona tries to make comedy venues more aware of accessibility barriers. The 29-year-old lives with Friedreich ataxia (FRDA or FA), a progressive neuromuscular condition…
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I am watching a child lose his independence for the third time
My son Charlie has recently been unable to get into his power wheelchair on his own, and I know I am watching him lose the ability to ambulate, as I did with two of my other sons. Charlie, 15, like his brothers Max, 20, and Rowen, 17, lives with Duchenne muscular dystrophy (DMD). I also…
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Clinical Research Alert: Phase 3 Study of Pridopidine in Individuals with ALS
Researchers at participating clinical research sites are seeking individuals with amyotrophic lateral sclerosis (ALS) for a phase 3 study (PREVAiLS). This study will evaluate the safety and efficacy of the investigational drug pridopidine to treat ALS. Pridopidine, which is being developed by Prilenia Therapeutics and Ferrer, has shown neuroprotective effects in multiple preclinical studies, as…
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CureDuchenne’s annual conference to highlight research, family support
CureDuchenne will host its annual Futures National Conference, a four-day event focused on bringing education, connection, and hope to the Duchenne and Becker muscular dystrophy (MD) community. The event will be held on May 21-24 at the JW Marriott Orlando, Grande Lakes. It will highlight the latest research and therapies for Duchenne and Becker, and feature…
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The Why Behind MDA’s Campaign to Support Family Caregivers
Carlee Weber and Nicole Lucas This month, the Muscular Dystrophy Association (MDA) is launching an important advocacy campaign urging Congress to advance policies that improve the lives of family caregivers in the neuromuscular community. At a time when policymakers are actively weighing changes to home and community-based services and the cost of caregiving continues to…
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Catch up on PPMD Together: Philadelphia
This past weekend, PPMD kicked off our 2026 PPMD Together series in Philadelphia, Pennsylvania. Individuals with Duchenne and Becker, their families, clinicians, and industry partners gathered for a day and a half full of connection and community. Attendees were welcomed Friday evening with a casual adult reception to connect and reconnect with familiar faces, while…
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With my mobility severely limited, I’m in dire need of a wheelchair
One problem dealing with a progressive disease like facioscapulohumeral muscular dystrophy (FSHD) is that there’s no way to predict the pace of disease progression. I think this is true for the aging process as well. In my case, it may also apply to the joint deterioration I’ve experienced following a horrifying automobile accident years ago.…
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Rethinking Exercise in Duchenne Muscular Dystrophy: What New PT/OT Research Means for Families
Emerging guidance offers cautious optimism—here’s what parents and caregivers should know For years, families affected by Duchenne muscular dystrophy have heard a consistent message: “be cautious with exercise, don’t overdo it.” That guidance came from a place of protection. Duchenne causes muscles to break down over time, especially under strain. Without clear evidence, exercise carried unknown risks, including how much strain…
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Building routines that support Duchenne care
Shalom Lim, who lives in Eastern Singapore, was diagnosed with Duchenne muscular dystrophy at 4 months old in 1996. He shares how early diagnosis shaped a lifelong approach to daily care and routines. The post Building routines that support Duchenne care appeared first on Muscular Dystrophy News.
