Top Tweets for #LivingWithMD
"I don't even know what question to ask." After a neuromuscular diagnosis, families look to the MDA Resource Center for support and answers. https://t.co/oDSTaD9EnS
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD https://t.co/dFN1XxRPuv
Despite his early frustration with checkups, columnist Patrick Moeschen eventually realized their importance for both him and others with MD. https://t.co/ZA2dSbYsHA
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD https://t.co/FFVXw30Am5
A new program from University of Alabama at Birmingham will bring an experimental exon-skipping therapy to certain patients with Duchenne MD. https://t.co/W5LZZPA2l1
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD https://t.co/qwohIhlILS
FDA advisers voted 9-3 that available evidence did not support deramiocel as a heart therapy for Duchenne muscular dystrophy. https://t.co/y9edvqbhbg
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD
Ongoing steroid treatment was linked to slower lung-function decline and later breathing support in older teens and adults with DMD. https://t.co/IdDqD0ZcmE
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD
Columnist Betty Vertin shares big news about a bigger house her family is buying that will better accommodate her sons with Duchenne MD. https://t.co/QTaTzvdQ4C
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD
The FDA is considering whether to conditionally approve a new treatment for DMD patients with mutations amenable to exon 51 skipping. https://t.co/V3e30rNY9r
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD
MDA criticized a DOJ memorandum on disability care, saying it threatens in-home and community-based services for people with disabilities. https://t.co/mI8mXImPhM
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD
A final decision from the FDA is expected by Nov. 27, and if approved, BBP-418 would become the first FDA-approved therapy for LGMD2i. https://t.co/6fgekFeUO0
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD
Dyne launched a global clinical trial, FORZETTO, to test its exon-skipping therapy z-rostudirsen in boys with Duchenne muscular dystrophy. https://t.co/ZXGmYoawOd
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD
Columnist Patrick Moeschen invites readers to join the newly relaunched Muscular Dystrophy News Today Forums, where a community is growing. https://t.co/tuJRY3VHKJ
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD
Seeing two sons with DMD lose the ability to walk isn't making the third son's disease progression any easier, says columnist Betty Vertin. https://t.co/lWOESp8bkg
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD
Columnist Betty Vertin shares a conversation with her daughter Lexi about finding out she was not a DMD gene carrier. https://t.co/BjH9j9nPkK
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD
Epicrispr Biotechnologies is partnering with Forge Biologics to support the development of EPI-321, an one-time epigentic treatment for FSHD. https://t.co/rnQ7Nbt00O
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD
As columnist Shalom Lim continues to process the loss of a dear friend, he explains why DMD advocacy work is his calling in life. https://t.co/lZau2jZhII
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD
An EU committee recommended expanding approval of DMD treatment Agamree to include patients as young as 2. https://t.co/W96MtlxArt
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD
Starting daily corticosteroids earlier in young children with DMD helps them move better and walk or run faster, according to a study. https://t.co/ZO3jxWbFl9
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD
Columnist Betty Vertin writes about what keeps Max, Charlie, and Rowen, her three sons with DMD, busy over the summer when school is out. https://t.co/yTPgSMorBP
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD
Upsher-Smith launched Kymbee support websites offering guidance on treatment, access, and care for DMD patients, caregivers, and providers. https://t.co/aYgQSdOsqg
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD
Struggling to safely operate a walker at home, columnist Robin Stemple explores several other mobility devices, including the Zeen. https://t.co/UZ6uzoSlWe
#musculardystrophynews #musculardystrophy #musculardystrophycommunity #livingwithMD
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