Duchenne UK, the Muscular Dystrophy Association (MDA) and Parent Project Muscular Dystrophy (PPMD) announce a joint grant of $686,500 to Dr William Evans (principal investigators) at the University of California, Berkeley to use a novel method to measure changes in total muscle mass in Duchenne muscular dystrophy patients through biomarkers in urine samples.
Pfizer Inc's investigational gene therapy candidate (PF-06939926) being developed to treat Duchenne muscular dystrophy (DMD) received Fast Track designation from the U.S. Food and Drug Administration (FDA), it announces.
Caring for patients with physical disabilities and debilitating health conditions involves not only providing the means to help them improve their functional abilities, but also being a partner in helping them live their lives on their terms. Jean L. Minkel, PT, ATP shares her experience in this feature.
The US Food and Drug Administration (FDA) has granted Breakthrough Device designation for Stentrode, an implantable medical device designed to translate brain activity or stimulate the nervous system from the inside of a blood vessel, without the need for open brain surgery, Synchron announces in a media release.
Read More
To celebrate MDA National Muscular Dystrophy Awareness Month in September, the Muscular Dystrophy Association (MDA) is hosting virtual events to raise funds for treatment and care for people affected by muscular dystrophy, ALS, and related neuromuscular disease.
Read More
The US Food and Drug Administration (FDA) has granted accelerated approval to Viltepso (viltolarsen) injection for the treatment of Duchenne muscular dystrophy (DMD) in patients who have a confirmed mutation of the DMD gene that is amenable to exon 53 skipping, it announces.
Read More
The FSHD Society has awarded $300,000 a year to expand the Facioscapulohumeral Muscular Dystrophy Clinical Trial Research Network (FSHD CTRN), with consideration of follow-on funding of $300,000 a year in 2021 and 2022.
Read More
Jiffy Lube and the Muscular Dystrophy Association (MDA) are teaming up for the ninth annual MUSCLE UP! campaign. Throughout the month of August, Jiffy Lube customers who make a donation of $3 or more to MDA at participating locations will receive a MUSCLE UP! savings book containing discounts on services at Jiffy Lube.
Read More
Dr Kevin Flanigan from Nationwide Children’s Hospital has treated two patients with gene therapy that carry the Duplication 2 mutation, a very rare Duchenne muscular dystrophy (DMD) mutation, CureDuchenne reports.
Read More
This year, the International Association of Fire Fighters (IAFF) launches its annual Fill the Boot fund-raiser for the Muscular Dystrophy Association (MDA) online to address social distancing guidelines for the firefighters and the vulnerable community MDA serves.
Read More
Parent Project Muscular Dystrophy (PPMD) expands its Certified Duchenne Care Center Program (CDCCP) with the certification of the clinic at Akron Children’s Hospital (Akron Children’s) in Akron, Ohio.
Read More
The FSHD Society, a patient advocacy organization for facioscapulohumeral muscular dystrophy (FSHD), will hold several virtual Walk & Roll to Cure FSHD events this September 12 in place of the in-person gatherings that had been planned for this summer and fall, it notes in a news release.
Read More
“Back to School in the Midst of COVID-19: Concerns for the Neuromuscular Disease Community,” a Facebook Live discussion, will take place Friday, July 31, at 3:00 PM EST.
Read More
Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), celebrates its 26 anniversary with the start of PPMD’s Virtual Annual Conference on Wednesday, July 22, 2020, at 6pm eastern.
Read More
NS Pharma Inc, a wholly owned subsidiary of Nippon Shinyaku Co Ltd, launches NS Support for patients with Duchenne muscular dystrophy (DMD) and their healthcare providers.
Read More
The FSHD Society held a landmark meeting recently in which individuals and families living with facioscapulohumeral muscular dystrophy (FSHD) told representatives from the US Food and Drug Administration (FDA) about how the muscle-wasting disease affects their health, and what they hope future treatments will do to improve their quality of life.
Read More
Researchers from the University of Alberta have developed a synthetic molecule that they suggest stops the production of a toxic muscle-killing protein in people with facioscapulohumeral muscular dystrophy (FSHD).
Read More
The FSHD Society’s 27th annual International Research Congress (IRC), which is being conducted entirely online for the first time in the organization’s history has opened, and reportedly has set an attendance record as the result of going online.
Read More