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What to Know About Changes to Food Assistance through SNAP
Funding for the Supplemental Nutrition Assistance Program, which provides food assistance to more than 42 million children and adults across the country – including 4 million people with disabilities – will run out in November as a result of the federal government shutdown. Unless the administration takes emergency measures, like it did with the Special…
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Avidity Biosciences to be Acquired by Novartis
Yesterday, Avidity Biosciences announced a definitive agreement to be acquired by Novartis. The transaction includes Avidity’s late-stage programs, including delpacibart zotadirsen (del-zota) for Duchenne. According to Avidity’s announcement, the company and Novartis intend to keep ongoing studies running smoothly and plan for a seamless transition of programs. The acquisition is expected to close in the…
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Avidity Biosciences to be acquired by Novartis
When CureDuchenne invested in Avidity Biosciences in 2018, it was with strong belief in their technology and the promise of what it might be able to achieve in Duchenne. We congratulate Avidity on all their success to date, and celebrate with them on this important new development. And we look forward to working with Novartis…
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I’m giving everything I have for Duchenne MD — in my own way
We are on the brink of November, and it’s beginning to turn cold here in Nebraska. My husband and I are debating whether we should turn the heat on. I say yes. He says no. Each morning before school is a frenzy as we search for jackets our children can’t remember where they put. My…
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Letter from Italfarmaco about patient deaths while taking givinostat
Italfarmaco issues a letter to address the recent online discussions about the individuals who have passed away while being treated with Duvyzat (givinostat), confirming that they have determined the deaths are not related to treatment, and that all the relevant information has been submitted to regulatory authorities. Community letter attached. Italfarmaco StatementDownload The post Letter…
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Italfarmaco Addresses Patient Deaths, DUVYZAT Safety Profile in Community Letter
Italfarmaco, the company that developed DUVYZAT® (givinostat), has shared a letter to the Duchenne muscular dystrophy community addressing concerns raised in recent online, community-based discussions about patient deaths involving individuals living with Duchenne who were being treated with DUVYZAT. DUVYZAT was approved by the U.S. Food and Drug Administration (FDA) in March 2024 for individuals…
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DMD treatment Agamree may avoid issues of traditional steroids
Data from two clinical trials confirm that Agamree (vamorolone), an approved anti-inflammatory treatment for people with Duchenne muscular dystrophy (DMD), blocks the action of a receptor involved in regulating the balance of salt and water in the body, and may have advantages over traditional corticosteroids. A study found the biological action of Agamree, which also…
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This month, I’m celebrating my birthday and disability inclusion
This Saturday, I turn 30. My birthday lands on the same day that many of us in Singapore, where I live, will wear purple for our annual disability inclusion event, the Purple Parade. In the past three decades, I’ve marked many milestones with Duchenne muscular dystrophy (DMD), a genetic condition that weakens my muscles over…
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Becker Muscular Dystrophy Series Part 1: Neuromuscular Care and Genetics
The first session in PPMD’s Becker muscular dystrophy webinar series brought together clinical experts and a community member to talk about genetics, neuromuscular care, and what it means to live with Becker. Below is an overview of key points and the recording in case you missed it! Speakers: Lauren Bogue MS, CGC, Curator for The…
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