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3 articles from the last 30 days matching "Duchenne or Becker Muscular Dystrophy"

AdvocacyRSSApr 30

CureDuchenne’s annual conference to highlight research, family support

CureDuchenne is hosting a four-day conference in Orlando from May 21-24 where families and patients with Duchenne and Becker muscular dystrophy can learn about the latest research, new treatments, and connect with others in the community. The event aims to provide education, support, and hope to people affected by these muscle-weakening conditions.

WHY IT MATTERSThis conference offers patients and families direct access to the latest research updates and treatment options for Duchenne and Becker muscular dystrophy, plus the chance to connect with others managing these progressive conditions.
ℹ Good to knowDuchenne muscular dystrophyBecker muscular dystrophyRead →
AdvocacyRSSApr 29

With my mobility severely limited, I’m in dire need of a wheelchair

A person with facioscapulohumeral muscular dystrophy (FSHD), a progressive muscle disease, is sharing their experience of losing mobility and needing a wheelchair. FSHD gradually weakens muscles over time, but it's hard to predict how fast the disease will progress in each person. This person's situation was made more complicated by injuries from a car accident years ago that damaged their joints.

WHY IT MATTERSFSHD patients face unpredictable disease progression that can rapidly impact mobility and independence, making adaptive equipment planning and financial preparation for accessibility needs critical but difficult.
ℹ Good to knowFacioscapulohumeral muscular dystrophyRead →
AdvocacyRSSApr 22

Collaboration aims to improve design of FSHD clinical trials

Three organizations that work with facioscapulohumeral muscular dystrophy (FSHD) patients are joining together to make clinical trials better. FSHD is a rare muscle disease that causes weakness in the face, shoulders, and upper arms. This partnership wants to improve how these trials are designed so they can test new treatments more effectively.

WHY IT MATTERSBetter-designed clinical trials mean faster progress toward treatments for FSHD, and patient input through the FSHD Society ensures trials are structured in ways that actually work for people living with the disease.
ℹ Good to knowFacioscapulohumeral muscular dystrophyRead →

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