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2 months ago | 
musculardystrophynews.com | Steve Bryson |Marisa Wexler |Mary Chapman
Two weeks ago, I stood on stage at the Fullerton Hotel Singapore to receive a Study U.K. Alumni Award for “exceptional efforts in driving inclusion and positive change in society.” The British high commissioner to Singapore handed me the award while my partner, Amanda, and my caregiver, Glenda, cheered me on. It was a bittersweet moment, as my grandmother had passed away just six days earlier.
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2 months ago | 
friedreichsataxianews.com | Mary Chapman |Hawken Miller |Larry Luxner
Note: This story has been updated March 6, 2025, to correct a quote from Mindy Henderson, MDA vice president of disability outreach and empowerment. The Muscular Dystrophy Association (MDA) is once again hosting its annual gathering, the MDA Clinical & Scientific Conference. The 2025 event will take place on March 16-19 in Dallas at the Hilton Anatole.
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2 months ago | 
myastheniagravisnews.com | Mary Chapman |Margarida Maia |Andrea Lobo |Marisa Wexler
The Muscular Dystrophy Association (MDA) is once again hosting its annual gathering, the MDA Clinical & Scientific Conference. The 2025 event will take place on March 16-19 in Dallas at the Hilton Anatole. The four-day event will bring together scientists, clinicians, affiliated healthcare providers, academicians, advocates, and industry leaders from around the world to explore the latest advances in neuromuscular disease (NMD) research and treatment.
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2 months ago | 
musculardystrophynews.com | Mary Chapman |Marisa Wexler
The Muscular Dystrophy Association (MDA) is once again hosting its annual gathering, the MDA Clinical & Scientific Conference. The 2025 event will take place on March 16-19 in Dallas at the Hilton Anatole. The four-day event will bring together scientists, clinicians, affiliated healthcare providers, academicians, advocates, and industry leaders from around the world to explore the latest advances in neuromuscular disease (NMD) research and treatment.
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2 months ago | 
alsnewstoday.com | Mary Chapman |Lindsey Shapiro |Andrea Lobo |Teresa Carvalho
The Muscular Dystrophy Association (MDA) is once again hosting its annual gathering, the MDA Clinical & Scientific Conference. The 2025 event will take place on March 16-19 in Dallas at the Hilton Anatole. The four-day event will bring together scientists, clinicians, affiliated healthcare providers, academicians, advocates, and industry leaders from around the world to explore the latest advances in neuromuscular disease (NMD) research and treatment.
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Feb 11, 2025 | 
musculardystrophynews.com | Marisa Wexler |Mary Chapman
A fundraiser through the online role-playing game World of Warcraft has raised more than $2 million to support CureDuchenne, an organization dedicated to combating Duchenne muscular dystrophy (DMD). The fundraiser, which launched last year in partnership with Warcraft’s maker Blizzard Entertainment, is the largest contribution from a corporation given to CureDuchenne, according to a press release from the nonprofit.
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Feb 10, 2025 | 
friedreichsataxianews.com | Jean Ker Walsh |Marisa Wexler |Mary Chapman |Lindsey Shapiro
My husband, Dave, and I had a tough year in 2023, when Dave lost both parents. Our grief has lessened, but we’re still working through it. At times our ability to grieve was blocked because Dave and his siblings were trying to figure out what each parent would’ve wanted in their ceremonies and burials. This experience brought forth a little shadow in my head. As much as I can, I want to preplan my arrangements so my loved ones don’t have to plan while they grieve.
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Jan 27, 2025 | 
copdnewstoday.com | Andrea Lobo |Mary Chapman |Marisa Wexler |Lindsey Shapiro
Lower respiratory diseases including chronic obstructive pulmonary disease (COPD) were the sixth leading cause of death in the U.S. in 2022, accounting for 4.5% of all deaths registered that year. That’s according to a report, “Deaths: Leading Causes for 2022,” released by the U.S. Centers for Disease Control and Prevention. In 2021, COPD was the fourth leading cause of death worldwide, according to the World Health Organization.
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Jan 16, 2025 | 
musculardystrophynews.com | Lindsey Shapiro |Margarida Maia |Mary Chapman |Hawken Miller
The investigational therapy DYNE-101 worked as expected and led to functional improvements for people with myotonic dystrophy type 1 (DM1) in a clinical trial, according to an update from developer Dyne Therapeutics. The Phase 1/2 ACHIEVE trial (NCT05481879) will now enroll a new group of participants who will all receive the dose that’s so far shown the most promising clinical benefit.
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Dec 10, 2024 | 
musculardystrophynews.com | Marisa Wexler |Robin Stemple |Mary Chapman |Betty Vertin
The venture philanthropy organization SOLVE FSHD is offering $10 million in prizes for innovators who are working to develop new treatments for facioscapulohumeral muscular dystrophy (FSHD). “This competition will bring together the brightest minds in medicine, technology, and science, all working toward a cure for this devastating disease,” Eva Chin, executive director of SOLVE FSHD, said in a press release from the organization.
