FDA grants orphan status to Edgewise’s muscular dystrophy drug … – BizWest FDA grants orphan status to Edgewise’s muscular dystrophy drug … – BizWest January 4, 2024 grantlogan Muscular Dystrophy Ability Today FDA grants orphan status to Edgewise’s muscular dystrophy drug …  BizWest Read more at: https://news.google.com/rss/articles/CBMiXWh0dHBzOi8vYml6d2VzdC5jb20vMjAyMy8xMi8wMS9mZGEtZ3JhbnRzLW9ycGhhbi1zdGF0dXMtdG8tZWRnZXdpc2VzLW11c2N1bGFyLWR5c3Ryb3BoeS1kcnVnL9IBAA?oc=5 The post FDA grants orphan status to Edgewise’s muscular dystrophy drug … – BizWest appeared first on Ability Today ..read more

‘It was exhilarating’ – Girl with muscular dystrophy walks runway at Bristol Fashion Show — ITV News ‘It was exhilarating’ – Girl with muscular dystrophy walks runway at Bristol Fashion Show — ITV News November 22, 2023 grantlogan Latest Headlines Ability Today A nine-year-old girl with a rare form of muscular dystrophy has described walking the runway at Bristol Fashion Show as “exhilarating”. Carmela Chillery-Watson, who used a frame to walk the runway, has been appearing at the fashion show since she was five. She has LMNA congenital muscular dystrophy, a progressive muscle-wasting conditi ..read more

Gene Therapy for Kids’ Deadly Muscle Disease Fails to Reach Trial Goal – Yahoo Finance Gene Therapy for Kids’ Deadly Muscle Disease Fails to Reach Trial Goal – Yahoo Finance November 5, 2023 grantlogan Latest Headlines Ability Today Sarepta Therapeutics Inc. and Roche Holding AG slumped after the partners’ trial of a gene therapy for Duchenne muscular dystrophy failed meet the main goal of a study. After its trading was halted, Sarepta shares sank 45% in premarket trading on Tuesday. If that holds into regular trading, it will be the shares’ biggest drop since January 2021. Roche fell as much ..read more

When I finally discovered the benefits of support groups – Muscular Dystrophy News When I finally discovered the benefits of support groups – Muscular Dystrophy News October 28, 2023 grantlogan Latest Headlines Ability Today I’ll admit that I was a support group cynic in my younger days. My attitude was that I’d figure things out on my own. I just couldn’t see the benefit of sitting around a table and talking to others about my struggle with facioscapulohumeral muscular dystrophy (FSHD). In retrospect, my viewpoint was shortsighted and selfish. My first actual experience with support groups w ..read more

‘I’m 14 and have muscular dystrophy, it won’t stop me from pushing the limits’ – Kidspot ‘I’m 14 and have muscular dystrophy, it won’t stop me from pushing the limits’ – Kidspot October 15, 2023 grantlogan Latest Headlines Ability Today Daniel is a force to be reckoned with. Ever since the 14-year-old could remember he has pushed the limits and dreams of one day becoming a Paralympian. It wasn’t an easy start for the Sydney boy, who is diagnosed with Congenital Muscular Dystrophy. “Daniel showed symptoms from birth but did not receive an official diagnosis until 20 months,” his mum Jo told Ki ..read more

What I’ve learned after years of attending my sons’ IEP meetings — Muscular Dystrophy News What I’ve learned after years of attending my sons’ IEP meetings — Muscular Dystrophy News October 8, 2023 grantlogan Latest Headlines Ability Today My oldest son, Max, is graduating from high school this year. I know I’ve shared that repeatedly, but the long list of lasts he’s experiencing as a senior continue to inspire my writing. I have three sons with Duchenne muscular dystrophy (DMD): Max, 17, Rowen, 14, and Charlie, 12. Recently, I attended Max’s last individualized education program (IEP) meetin ..read more

Muscular Dystrophy Golf Taster Shows Unique Power of This Game — Golfshake Muscular Dystrophy Golf Taster Shows Unique Power of This Game — Golfshake September 21, 2023 grantlogan Latest Headlines Ability Today Golf’s unique power to make a positive impact on lives was once again exemplified at The Shire, where 40 people, aged seven and over, took part in the first ever golf taster day organised in partnership between the Muscular Dystrophy UK and Golf Trust charities. Families from across the UK travelled to The Shire for the event, which gave people living with muscle wasting or weakening c ..read more

Muscular Dystrophy UK invests £1.3m into new research — Charity Today News Muscular Dystrophy UK invests £1.3m into new research — Charity Today News September 8, 2023 grantlogan Latest Headlines Ability Today MUSCULAR Dystrophy UK has announced that it is investing £1.3 million into 11 new research projects across England, Scotland, Northern Ireland and Wales. The leading charity for more than 110,000 children and adults in the UK living with one of over 60 muscle wasting and weakening conditions will be funding two PhD studentships, two three-year project grants, three 12-month grants and f ..read more

Muscular Dystrophy UK unveils new logo in effort to become more accessible – Civil Society Media Muscular Dystrophy UK unveils new logo in effort to become more accessible – Civil Society Media July 22, 2023 grantlogan Latest Headlines Ability Today Muscular Dystrophy UK has spent £38,000 on a new logo to refresh its brand in an effort to make it more accessible to its supporters. The charity, which supports people with the genetic condition where muscles waste away over time, said its previous brand was not “as accessible and inclusive as it could be”. It commissioned brand specialist Dan Du ..read more

World first trial for kids with Duchenne muscular dystrophy – The Sydney Children’s Hospitals Network World first trial for kids with Duchenne muscular dystrophy – The Sydney Children’s Hospitals Network July 22, 2023 grantlogan Latest Headlines Ability Today Three boys in NSW have become the youngest in the world to receive therapy for Duchenne muscular dystrophy as part of a world-first international clinical trial for children aged under four. Lucas (3), Hunter, (4) and Ollie (3) were all diagnosed with Duchenne muscular dystrophy before their third birthdays. The rare and life-limiting ge ..read more