CureDuchenne is proud to support the 34th Anniversary of the Americans with Disabilities Act (ADA). On July 26th, we celebrate this important civil rights law that works to ensure all people with disabilities have the same rights and opportunities as everyone else. #ADA34 #ThanksToTheADA #Duchenne #musculardystrophy #disabilitypride #disabilityrights #disabilityinclusion
CureDuchenne
Non-profit Organizations
Newport Beach, CA 5,125 followers
Together, we WILL cure Duchenne!
About us
CureDuchenne is the global leader in Duchenne research, patient care and innovation. We are committed to improving the lives of those affected by Duchenne through accelerating research, improving care and empowering the community. We won't stop until everyone has a cure. cureduchenne.org Founded by Paul and Debra Miller in 2003, after their son was diagnosed with the disease, CureDuchenne combines fundraising and venture philanthropy leveraging donor dollars to maximize support for promising research into effective treatments for those suffering from Duchenne. With transparency as a core value, investment proceeds are redeployed to support research and other mission critical programs to find a cure.
- Website
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http://www.cureduchenne.org
External link for CureDuchenne
- Industry
- Non-profit Organizations
- Company size
- 11-50 employees
- Headquarters
- Newport Beach, CA
- Type
- Nonprofit
- Founded
- 2003
- Specialties
- Research, Duchenne, DMD, Duchenne muscular dystrophy, Venture philanthropy, Venture Capital , Philanthropy, fundraiser, Community, Clinics, Support, and clinical trials
Locations
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Primary
100 Bayview Circle
Suite 5600
Newport Beach, CA 92660, US
Employees at CureDuchenne
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Vinh Ha
Director of Web Services | LAMP Developer (Linux, Apache, MySQL, PHP) | WordPress WooCommerce Developer | UI/UX (Frontend) Developer/Designer |…
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Paul Miller
President and Chief Operating Officer at PMG
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Debra Miller
Chief Executive Officer/Founder at CureDuchenne
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Laura Hameed
Possibilitarian. Nonprofit Executive, U of MN Regent Emeritus, Board Director, Aspen Institute Rodel Fellow. Accelerating equitable access to…
Updates
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ITF Therapeutics LLC announces the U.S. commercial launch of DUVYZAT™ (givinostat), a histone deacetylase inhibitor, for the treatment of patients six years of age and older with Duchenne muscular dystrophy (DMD). Additionally, ITF Therapeutics introduces the ITF ARC (Access, Resources, and Care) patient services program, offering comprehensive support and educational resources for patients and their families. Learn more about this treatment and the ITF ARC program: https://lnkd.in/gTBc-9JG #DUVYZAT #DMD #Duchenne #FDA #CureDuchenne
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A recent study co-funded by #CureDuchenne and the Collaborative Trajectory Analysis Project (cTAP) suggests that Duchenne Muscular Dystrophy (DMD) clinical trial enrollment criteria should be expanded beyond ambulatory status. Published in PLOS ONE, the study highlights the need for more specific enrollment criteria that could significantly increase patient participation and drive a more comprehensive evaluation of new therapies. Debra Miller, CEO of CureDuchenne, emphasized, "Research is progressing, but many trials focus on younger and ambulatory populations. We cannot leave older patients and young adults behind. This study demonstrates our need to continuously improve clinical trials to best serve our community." Read the full press release here: https://lnkd.in/gNtdSM7S #DMD #DMDResearch #ClinicalTrials #cTAP #togetherwewillcureduchenne
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Big thanks to the Tercano family for sharing their story and to @Orlando Magazine for raising awareness about Duchenne Muscular Dystrophy. Read their inspiring journey here: https://lnkd.in/g8g_YFw4 #Duchenne #CureDuchenne #Orlando #Duchenne #Duchennemusculardystrophy #musculardystrophy
Local Honor Roll Student & Family Share About Duchenne Muscular Dystrophy - Orlando Magazine
https://www.orlandomagazine.com
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Exciting News! CureDuchenne celebrates the #FDA's launch of the Rare Disease Innovation Hub, a groundbreaking initiative to accelerate therapy development for rare diseases like Duchenne and Becker muscular dystrophy. This Hub will centralize engagement, enhance collaboration, and advance regulatory science to bring hope and effective treatments to our community. Stay tuned for updates as we work together for a brighter future! #RareDisease #Duchenne #InnovationHub #DMD #FuturesForAll #CureDuchenne #FDA #Becker https://lnkd.in/g_eZWTta
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🎧 On this powerful episode of the "In Sickness" podcast, dad Josh Argall opens up about the emotional rollercoaster following his son Devin's diagnosis with Duchenne muscular dystrophy. From misdiagnoses to finding hope, Josh shares his journey and the determination to fight for his son's future. Special guest Debra Miller, founder and CEO of CureDuchenne, provides insights into the disease and the caregiver's journey. Don't miss this inspiring story of resilience and hope. Listen now: https://bit.ly/InSickPod Or listen on: Apple: https://apple.co/3Y9Ynok Spotify: https://spoti.fi/3WruOgv Amazon Music: https://lnkd.in/gvWiSbbf iHeart: https://ihr.fm/3YqUVWz #FuturesForAll #CureDuchenne #Duchenne #DMD #Podcast
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We can't wait!
Get ready for some incredible events coming up with CureDuchenne! I'll be in Madison, WI for an insightful dinner session, a I sincerely hope that if you're in the area, you'll join us for an inspiring and informative experience! Register for the Madison, WI dinner session on 7/20/24: https://cvent.me/95ndGy
CureDuchenne Cares Session: Madison, WI
web.cvent.com
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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
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CureDuchenne reposted this
Possibilitarian. Nonprofit Executive, U of MN Regent Emeritus, Board Director, Aspen Institute Rodel Fellow. Accelerating equitable access to treatments for kids with rare diseases.
If you like to #golf and want to do some #good at the same time, join CureDuchenne and #NHL Ryan Getzlaf, at Monarch Beach Golf Links in Dana Point, CA for the Getzlaf Golf Shootout. Mark your calendar for Sept 13-14! ✅ The Annual Getzlaf Golf Shootout brings together professional athletes, celebrities, and community members in support of CureDuchenne’s mission to save the lives of children affected by Duchenne muscular dystrophy. This two-day event, hosted by Ryan and Paige Getzlaf, features an “MVP Dinner” reception, followed by an action-packed day of golf and activities at the beautiful Monarch Beach Golf Links in Dana Point, California. Amazingly, Ryan & Paige Getzlaf have hosted this tournament for 13 years as a benefit for CureDuchenne and have raised more than $5.8M to fund research to save the lives of those with #Duchenne! National Hockey League (NHL) Anaheim Ducks The Chronicle of Philanthropy PGA TOUR Waldorf Astoria Monarch Beach Resort & Club #philanthropy #give #whyigive #dowellbydoinggood https://getzlafgolf.org *This tournament will sell out **MVP dinner only tickets available ***Sponsorships available
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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