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We’ll be attending CureDuchenne’s free workshop on Sept 7! Join us for presentations on Physical Therapy & Medical Equipment, Standards of Care, and more. Breakfast and lunch are provided, and travel assistance is available for those in need. For more information and to register, visit: https://cvent.me/ongmRz. Don’t forget to say hello to John Wing at the event! We look forward to seeing you there. #Duchenne #CureDuchenne
On World Duchenne Awareness Day, we are excited to spotlight our International Outreach Program, which brings hope and essential care to underserved countries. With multidisciplinary care, we aim to improve the lives of over 300,000 patients worldwide living with Duchenne Muscular Dystrophy (DMD). Our mission is to provide critical resources, training, and awareness to healthcare providers, closing the gap in diagnosis and treatment for those most in need. Together, we can ensure better care and a brighter future for everyone impacted by Duchenne. Watch the full interview with CureDuchenne Founder and CEO, Debra Miller here: https://lnkd.in/gvPuW7-G... THANK YOU NeurologyLive #WorldDuchenneAwarenessDay #CureDuchenne #UntilEveryoneHasACure #WDAD #WeWillCureDuchenne
Thank you for this generous grant. It will allow us to serve even more people around the globe who lack resources. 💙
We are thrilled to announce the 2024 Entrada Diversity, Representation, Equity and Advocacy MatterS (DREAMS) Grant Program recipients! These organizations are breaking barriers to combat discrimination and disparity in healthcare and are each being awarded $25,000 in support of initiatives that aim to better identify, understand, and reach people living with Duchenne who are currently underrepresented or underserved. Congratulations to: · CureDuchenne, to enable the program to expand efforts to diagnose, treat and support individuals affected by Duchenne in Nepal, Uganda, China and other countries throughout 2024-2025. · Little Hercules Foundation, to grow their individualized case management services for members of the Duchenne community and subsidize the cost of translation services when supporting families whose first language is not English. · Walking Strong Foundation, to provide services such as free one-on-one mental wellness and life coaching, access to mobility and assistive devices, and canine support animals. Scroll through to learn more about each of these important projects. A special thank you to our Review Committee: · Sean Baumstark, Founder, de:terminence, Podcast Co-Host, Two Disabled Dudes · Keisha Greaves, CEO & Founder, Girls Chronically Rock · Amaris S., PsyD · Aravindhan Veerapandiyan, MD We look forward to seeing how – by working together – we can make a meaningful difference for the Duchenne community! #WDAD2024 #StrongerThanDuchenne #Duchenne
You’re Invited to the Enchanted Garden Ladies Luncheon Benefiting CureDuchenne! - Tuesday, October 15, 2024 - 11 AM – 2 PM - Shady Canyon Golf Club in Irvine, CA Step into a world of elegance and compassion at the Enchanted Garden Ladies Luncheon in Newport Beach. The event features a breathtaking Fashion Show produced and sponsored by South Coast Plaza, with designs by Monique Lhuillier, Tom Ford, and Saks Fifth Avenue. Every ticket purchased helps accelerate research and bring hope to those living with Duchenne. Together, we cure Duchenne! Secure your spot today: https://lnkd.in/gbP4-XKn #LadiesLuncheon #FashionForACause #SouthCoastPlaza #MoniqueLhuillier #TomFord #SaksFifthAvenue #newportbeach #irvine #CostaMesa #LagunaBeach #SupportCureDuchenne #research
We know that for parents of a child with #Duchenne or #Becker MD and individuals living with the disease, research must advance faster. That’s why we started CureDuchenne Link, a biobank that provides researchers with biosamples and data from annual surveys and your medical records. It’s a comprehensive resource for researchers, and easy to participate as a donor. Every year, CureDuchenne Link gathers important survey data, blood, and urine samples from participants with Duchenne, Becker, and carriers. This creates a rich collection of data that, when combined with medical records, provides a deep understanding of the disease over time. Want to partner with us for research? Email us at [email protected] and visit cureduchennelink.org for more info! #DuchenneResearch #Biobank #DMD #Duchenne #RESERACH
As a patient advocacy organization committed to bringing transformative treatments to all individuals with Duchenne and #Becker muscular dystrophies, CureDuchenne commends the FDA for putting in place a Platform Technology Designation Program. We recently provided input to the FDA on the draft guidance, as #CureDuchenne believes that the Platform Technology Designation will be extremely useful for companies developing exon skipping therapeutics, and will be critical to lower the barriers to developing exon skipping drugs for rarer #Duchenne mutations. Read more: https://lnkd.in/gxaDPxcB #DMD #FDA #exonskipping
Keep an eye on our social channels to see Heather Medlin from #CureDuchenne Link and Erin Smith from PicnicHealth discuss how our collaboration benefits our participants personally while contributing to research for a cure! Learn more about CureDuchenne Link: https://lnkd.in/g3GaQxT #DMD #duchenne #cureduchennelink
As an early investor in Dyne Therapeutics, CureDuchenne is pleased to share that Dyne announced positive data from their Phase 1/2 trial of DYNE-251 in individuals with #Duchenne amenable to skipping exon 51. Individuals treated with 20 mg/kg once every 4 weeks for 6 months showed a mean dystrophin expression of 3.7% of normal when unadjusted for muscle content; when adjusted for muscle contest, the mean was 8.72% of normal dystrophin. Improvements were observed in multiple functional endpoints in the 20 mg/kg cohort at 6 months, as well as the 10 mg/kg group which was escalated to 20 mg/kg during the open-label extension (6 months to 1 year). Dyne is initiating registrational cohorts and will update us later this year with their plans for pursuing FDA approval via the accelerated pathway. #exonskipping #CureDuchenne #DMD #FDA #ClinicalTrials https://lnkd.in/g94sfmix
As the school year kicks off, it’s important to ensure your child with #Duchenne is set up for success. We’ve put together a selection of Back to School resources to help you navigate this journey. From advocacy tips to communication strategies, we've got you covered. Explore these essential tools today: 1️⃣ Navigating School with Duchenne: https://lnkd.in/g9QeYqyj 2️⃣ Communicating with the School Team: https://lnkd.in/gSYBbzF4 3️⃣ 2023 Back to School Resources: https://lnkd.in/gdZKfiuN Let’s make this school year a successful one together! #DMD #backtoschool #disability #inclusion #CureDuchenne
