Muscular Dystrophy News Home | Muscular Dystrophy News
2024年12月11日 · How I measure my quality of life as someone with LGMD. Since I began writing for Bionews, the parent company of Muscular Dystrophy News Today, I’ve connected with many people living with chronic illness outside of my “comfort community” — those with forms of muscular dystrophy (MD).
News Archives - Muscular Dystrophy News
Sevasemten lowers markers of muscle damage in BMD: Trial. The investigational oral therapy sevasemten significantly reduced markers of muscle damage in people with Becker muscular dystrophy (BMD) treated in a Phase 2 trial, according to top-line results announced by the therapy’s developer, Edgewise Therapeutics.
How I measure my quality of life as someone with LGMD
2024年12月23日 · While I live with limb-girdle MD, I have many friends who live with other types of MD.We all have challenges in common, such as physical barriers in public and disease progression that can cause problems with the heart and lungs.Many of us often wonder if we’ll live an average lifespan.
Top 10 muscular dystrophy stories of 2023
2024年1月2日 · No. 10 – With EMBARK trial data, Sarepta seeks to expand Elevidys’ approval. Elevidys (delandistrogene moxeparvovec-roki) is a one-time gene therapy approved in the U.S. for certain patients with Duchenne muscular dystrophy (DMD). Its developer, Sarepta Therapeutics, plans to seek expanded approval of the treatment following top-line findings in the Phase 3 EMBARK (NCT05096221) clinical ...
Educating all ages about living with muscular dystrophy
2024年10月7日 · In my four decades of life with limb-girdle muscular dystrophy, I’ve become comfortable educating everyone I meet about my quality of life and the ways all of us living with chronic, rare conditions have been given a wonderful chance to influence societal views of the disabled community. I’ve found it most effective to keep my talks age-appropriate.
Sevasemten lowers markers of muscle damage in BMD: Trial
2024年12月17日 · “This landmark study presents compelling biomarker data and promising signals that suggest the potential for functional stabilization with administration of sevasemten,” Craig McDonald, MD, a principal trial investigator and professor at the University of California Davis, said in a company press release.. Edgewise scientists will join Parent Project Muscular Dystrophy to discuss ...
About Us - Muscular Dystrophy News
Muscular Dystrophy News Today is a digital platform intended to provide the muscular dystrophy (MD) community with the most recent news and information on MD, as well as first-hand community perspectives from our patient and caregiver columnists.. All articles on Muscular Dystrophy News Today are original content produced by in-house writers and editors.
Living with Muscular Dystrophy
Muscular dystrophy refers to a group of genetic disorders associated with the progressive loss of muscle tissue and muscle strength. There is no cure yet for muscular dystrophy, but there are many treatments and strategies that can relieve patients’ symptoms and increase their quality of life.. Orthotic devices. Many patients need orthotic devices or braces early in the disease course.
Living With Muscular Dystrophy
MD progressively weakens muscles so that patients may require the help of assistive devices to maintain mobility and independence. These aids and assistive devices should be used only in consultation with a trained occupational therapist or physiotherapist.
Navigating DMD treatment: Patient stories - Muscular Dystrophy …
2024年8月8日 · Scientific advances have helped those with DMD live longer and richer lives. A number of treatments can help with symptoms and even slow disease progression including gene therapy and exon-skipping therapies.. But not every DMD treatment is pharmaceutical. Treatment can encompass physical therapy (PT), counseling, assistive devices, home adaptations, taking part in clinical trials, and even ...