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Cure CureDuchenne Link Research Overview Research Terms Exon Skipping Clinical Trials Care COVID-19 Resources Newly Diagnosed Clinic Steroid Use Emergency Care Resource Library DME Guide Medical ID Bracelets Navigating School NutritionOccupational Therapy Physical Therapy For Families - Find a Physical Therapist - Pool Activities - Stretching For Physical Therapists - PT Certification - Professional Courses For Clinics Community CureDuchenne CARES CureDuchenne FUTURES CureDuchenne Champions Family Stories Events Previous Webinars Family FundraisersMission Vision About Duchenne TeamBlog Board of Directors Scientific Advisory Board Sponsors Events & Webinars News Center - Press Releases - Partner News CD Ventures About CD Ventures Our Impact Get Involved Donate More Ways to Give Fundraise Shop Fundraising Events - Champions Miami - Champions Austin - Getzlaf Golf Shootout | Orange County, CA - Napa in Newport | Orange County, CA Search for: Donate FUTURE MOB CureDuchenne-Research-banner-mobile Stay Informed Find Out What’s New in Duchenne Research DISCOVER MORE CD Research Desktop Stay Informed Find Out What’s New in Duchenne Research DISCOVER MORE CD Links Linking the Community to a Cure NOW ENROLLING FUTURES DESKTOP early diagnosis Making Earlier Diagnosis a Reality with Newborn Screening CureDuchenne has partnered with Brigham & Women’s Hospital to offer the first supplemental newborn screening for Duchenne in a clinical setting. LEARN MORE great hope There is Great Hope for Duchenne! Newly Diagnosed Families, Get the Help You Need! LEARN MORE With a mission to cure Duchenne muscular dystrophy CureDuchenne breaks the traditional charitable mold and balances passion with business acumen. We will fulfill our mission to cure Duchenne muscular dystrophy with our innovative venture philanthropy model that funds groundbreaking research, early diagnosis and treatment access. With pioneering education and support programs, our organization drives real change for those with Duchenne muscular dystrophy and their loved ones. The CureDuchenne one-to-one program provides meetings with our scientists, physical therapists, Duchenne parents, fundraising team and family support resource coordinators. Email us at Cares@CureDuchenne.org to set up a time that works with your schedule. Together we will cure Duchenne muscular dystrophy! Read our IMPACT report Making an Impact Accelerating Curative treatments 10 Since the inception of CureDuchenne, life expectancy for Duchenne has increased by a decade. Funding Critical Clinical Trials 1 8 18 projects funded by CureDuchenne have progressed to clinical trials. Making an Impact $ 50 +M We’ve raised over $50 million for research, education and care. Accelerating a Cure 1st CureDuchenne contributed early funding for the first FDA-approved Duchenne drug. Working Towards the Future $3B Our model has leveraged over $3 billion in follow-on funding for future programs from investors and biotech companies. Duchenne is a devastating muscle disease. Duchenne muscular dystrophy (DMD) is the most common form of muscular dystrophy, occurring in approximately 1:5,000 male births. Those affected with DMD lose their ability to walk, feed themselves, breathe independently and succumb to heart failure. But there’s hope through new pharmacological and gene-based therapies. You can help make a difference in finding a cure. Learn About Duchenne Family Stories Mama Bear Mother of two boys with Duchenne shares how she’s successfully advocated for her children with a rare disease as a mama bear. A Race Against Time: The CureDuchenne Clinic’s Remarkable Efforts Bring Life-Changing Gene Therapy to Young Boy on the Brink of Ineligibility A Race Against Time: The CureDuchenne Clinic’s Remarkable Efforts Bring Life-Changing Gene Therapy to Young Boy on the Brink of Ineligibility. Debra Miller Representing Patient Advocacy Community My name is Debra Miller, founder and CEO of CureDuchenne, and the mother of an incredible son, Hawken, who has Duchenne muscular dystrophy. I’m here today to represent the voice of patient advocacy organizations serving those impacted by Duchenne – all of whom are in support of the accelerated approval of SRP-9001. Why Mothers Should Be Celebrated Every Day There is no way to be a normal parent, when you have abnormal circumstances. The important thing is that you keep getting up every day loving those kids. You may think it’s not enough, but your children see you differently than you see yourself. I have days that I feel like super mom and days that I feel like a huge failure. It’s just too hard,” I mumble to myself as I crawl into bed at night unsure of how I will possibly do the whole thing again tomorrow. Hawken’s Perspective: Overcoming a Fractured Femur with Duchenne There’s plenty of times in life where plans fall apart. That’s especially the case if you have Duchenne muscular dystrophy like me. A building you were expecting to enter might […] Finding A Way on Father’s Day Happy Father’s Day to all of the dads out there who have either found a way – or made one – so that their kids can experience their best life. – Paul Miller, aka Hawken’s dad The CureDuchenne 2019 FUTURES Time Capsule Video The CureDuchenne Time Capsule Video is a beautiful compilation of interviews conducted at the 2019 FUTURES Conference in Anaheim, CA. We asked families to share their stories with us, as […] We were very impressed with CureDuchenne’s portfolio and how their funding is put towards research. We wanted the money we raise to go 100% towards research in clinical trials…” Braedan’s Bridge began the journey in 2011 shortly after our own son, Braedan was diagnosed with Duchenne muscular dystrophy. As most parents, our story is very similar. One day you […] We didn’t know anything about Duchenne and felt isolated that there was no one we could turn to, other than the doctors or the internet for advice, inspiration, or HOPE…” August 8, 2011 was the day we first heard the word Duchenne. Every moment of that day is etched in my memory. We were hit out of the blue with […] We joined CureDuchenne more than a decade ago in their mission to find a cure for Duchenne. We partnered with CureDuchenne because they are steadfast in identifying and funding promising research…” When our two sons Timothy, 13, and Andrew, 10, were diagnosed with Duchenne muscular dystrophy there was little hope. We were told there was no cure or treatment and that […] Read all Family Stories Latest News Handling Emergencies May 7, 2024 Global Nonprofit CureDuchenne to Host FUTURES National Conference for the Duchenne and Becker Muscular Dystrophy Community on May 23-26 in Orlando, FL May 7, 2024 Rolling Through the Magic: Exploring Disneyland in a Power Wheelchair May 3, 2024 Napa in Newport Celebrates a Decade of Impact and Raises More Than $1.35M for CureDuchenne April 24, 2024 How You Can Drive with a Disability April 19, 2024 View All Latest News Upcoming Events 2024 FUTURES: Orlando, FL May 23 Knoxville Brewfest June 22 @ 12:00 pm CAREGIVER DINNER SESSION | Madison, WI July 20 @ 6:00 pm CAREGIVER DINNER SESSION | Little Rock, AR August 3 @ 6:00 pm WORKSHOP | Minneapolis, MN August 17 @ 8:00 am View All Events CLICK to schedule a one-to-one with the experts for personalized support HERE About Mission About Duchenne MD TeamBlog Store News Center Get Involved Donate Fundraising Attend an Event CureDuchenne 100 Bayview Circle, Suite 5600 Newport Beach, CA 92660 (949) 872-2552 info@cureduchenne.org Get Connected PRIVACY POLICY | TERMS OF USE | INDIRECT COST POLICY | TAX INFO CureDuchenne is a 501c3 registered tax-exempt nonprofit organization. Federal Tax ID: #20-0299958 | ©2024 CureDuchenne. All rights reserved. Please be advised that the contents within the CureDuchenne site include a compilation of articles, advisements, and references from the community. CureDuchenne does...