-
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…
-
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…
-
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…
-
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…
-
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…
-
Sign up to hear from CureDuchenne
Newsletter signup “*” indicates required fields Email* Area of interest* Research Family services Events Ways to give Consent Yes, please keep me updated on news and announcements related to topics I’ve selected. By clicking the SIGN UP, I agree to abide by the privacy policy. The post Sign up to hear from CureDuchenne appeared first…
-
2026 MDA conference to focus on ‘innovation driving us forward’
The Muscular Dystrophy Association (MDA) has announced the agenda for its 2026 MDA Clinical & Scientific Conference — slated for March 8-11 in Orlando, Florida — and the focus, the nonprofit says, is on “groundbreaking research and clinical achievements.” The annual event, held in a different locale each year, brings together scientists, clinicians, affiliated healthcare providers,…
-
Quest Podcast: Voices of Inclusion: Celebrating NDEAM with Disability:IN
October is National Disability Employment Month (NDEAM). In this month’s episode of the Quest podcast, we dive into accessibility and inclusion in the workforce with Russell Shaffer, Executive Vice President of Strategy & Programs at Disability:IN. Drawing on his lived experience of vision loss and his years of working in corporate diversity, equity, and inclusion,…
-
Cooking with a Disability? Yes, Chef!
Growing up as a full-time wheelchair user living with myofibrillar myopathy (MFM), 21-year-old Gabby DiSalvo always considered the kitchen an inaccessible place. But when the COVID-19 pandemic started while she was in high school, and she was stuck at home, Gabby tried cooking to pass the time. Creating recipes and learning how to cook soon…
-
I ‘muscle through’ LGMD challenges with a little bit of humor
I’ve always had a robust sense of humor. Some people have told me that I’m witty and quick to respond to a funny situation while also defusing tense conversations with laughter. I think it’s a piece of my armor that protects me from my rare chronic illness, limb-girdle muscular dystrophy. (That’s type 2E/R4 for those…
