CureDuchenne’s Post

We can't wait!

Had a great meeting with Noga Leviner and Dan Drozd, MD MSc from PicnicHealth, a valued partner of #CureDuchenne. Did you know that the average Duchenne patient sees over 20 unique healthcare providers per year? When it comes to managing care for a loved one, it can be overwhelming. Trust me, been there. When you participate in #CureDuchenneLink, our data-integrated #biobank that’s open to individuals with #Duchenne, #Becker, and #carriers, you are not only helping advance #research but you also get free access to your complete medical records in one simple online portal through #PicnicHealth – a true lifesaver when it comes to managing a complex disease like Duchenne. Learn more: https://lnkd.in/g3GaQxT #DMD #FDA

NeurologyLive recently chatted with Debra Miller and Dr. Michael Kelly to discuss our recent webinar on ELEVIDYS, the newly approved gene therapy for Duchenne muscular dystrophy. Watch the full interview to hear their insights on ELEVIDYS, the future of gene therapy, and our ongoing efforts to improve treatments. Catch the interview here: https://lnkd.in/gfUsJu4e You can also watch the full ELEVIDYS webinar here: https://lnkd.in/gEuSJ4PQ #duchennemusculardystrophy #duchenne #DMD #genetherapy #elevidys Sarepta Therapeutics

Nathan, a talented student from The University of Texas at Austin, has been accepted into the Austrian American Mozart Academy in Salzburg! Despite the challenges of living with Duchenne muscular dystrophy, Nathan has secured a leading role in an opera during the academy. This opportunity is a dream come true! However, his travel and accommodations are costly due to his care needs. He's raising $15,000 to help make this journey. Every bit helps! Let’s support Nathan in achieving his dreams. Please help Nathan: https://lnkd.in/grrNW3b6 #DMD #CureDuchenne #MozartAcademy #DreamBig #Fundraiser

Join Us for FUTURES National Family Conference 2025 in San Antonio, Texas �� A Transformative Event for the Duchenne Community! Registration is now open: https://lnkd.in/g7CSkdU2 #CureDuchenne #duchenne #DMD #sanantonio #duchenneCommunity. #FuturesForAll

Thank you, Muscular Dystrophy News, for this valuable resource on physical therapy in Duchenne muscular dystrophy featuring insights from our very own Physical Therapist, Jennifer Wallace. Read more here: https://lnkd.in/ge9EQHzD

WEBINAR:: The FDA Approval of Sarepta Therapeutics's ELEVIDYS to Duchenne Patients Ages 4 and up. https://lnkd.in/g773j3kG #DMD #FDA #CureDuchenne #Duchenne