EMPOWERING those with Duchenne Muscular Dystrophy and Inspiring the Rest
Through our efforts, we aim to ignite hope, drive progress, and build a future where every person impacted by Duchenne can thrive.
What is Duchenne?
(Pronounced “Du Shen”)
Named after French neurologist Duchenne de Boulogne, Duchenne muscular dystrophy (DMD) is the most common fatal genetic disorder affecting children. It impacts approximately 1 in 5,000 boys born worldwide each year, and tragically, there is currently no cure. Diagnosis typically occurs between 3 and 5 years of age, often signaled by initial signs such as muscle weakness and enlarged calf muscles.
The Duchenne gene is located on the X chromosome, which is why it primarily affects boys. This genetic defect causes muscles, including those vital for heart and lung function, to progressively weaken and degenerate over time. While the condition is carried by the mother, it frequently arises from a spontaneous genetic mutation rather than being inherited through the family.
Importantly, Duchenne does not discriminate and can occur in individuals from any racial, ethnic, or socioeconomic background.
Boys Born with DMD Globally Each Year
Age of Diagnosis
Age Most Boys Stop Walking
Families Assisted by Walking Strong
Our Mission
Our mission is to empower individuals affected by Duchenne Muscular Dystrophy and their families. We are committed to providing comprehensive support, funding cutting-edge scientific research, and building a strong and compassionate community.
Provide Assistance & Equipment
Provide Mindset Coaching Support
Our free Duchenne Mindset Coach program empowers patients, caregivers, and siblings facing the overwhelming mental health challenges of living with Duchenne. Generous donors fund this life-changing service.
Offer Experiences
Beyond essential medical support, Walking Strong enriches the lives of these courageous young men by providing unforgettable experiences like attending ball games and passionately supporting the LAFC Power Soccer Team. We believe in fostering joy, creating lasting memories, and building community for individuals living with Duchenne.
Donate to Scientific Research
Walking Strong supports life-saving scientific research to the Center For Duchenne Muscular Dystrophy at UCLA who leads the nation in translational science focused on Duchenne and is the first comprehensive Duchenne clinic in the western United states.
Support Our Mission
Your Donation Keeps Us And All The Families With Duchenne, Walking Strong.
Scientific Research
Research is at the forefront of the fight against Duchenne Muscular Dystrophy. Scientists are actively pursuing innovative treatments, including gene therapy, exon skipping, and muscle regeneration strategies. These efforts hold significant promise for improving the lives of individuals with DMD. By supporting research, we can contribute to a future where effective treatments are available, offering hope and a better outlook for those affected by this challenging condition.
Hope
Current Treatments for Duchenne Muscular Dystrophy
While there is no cure for Duchenne, many exciting scientific breakthroughs have occurred in the last few years, offering treatment that successfully manages symptoms, stalls progression, and manages clinical care. Link below for more information.
The biggest shift in Duchenne care over the past few years has been the move from managing symptoms toward directly restoring dystrophin, the protein whose absence drives the disease. Gene therapy arrived first: ELEVIDYS (delandistrogene moxeparvovec), an AAV-delivered micro-dystrophin therapy, won accelerated approval in 2023 and was expanded to a broader age range and to non-ambulatory patients in 2024, based on functional and biomarker evidence. However, that progress hit a real setback — after reports of fatal acute liver failure in non-ambulatory patients, the FDA added a boxed warning in November 2025 and removed the non-ambulatory indication from the label, so ELEVIDYS is currently approved only for ambulatory patients. Sarepta is now studying an enhanced immunosuppression regimen to try to safely reopen that population. FDASarepta
Exon-skipping drugs — a second major approach — use antisense oligonucleotides to help cells “skip over” mutated gene segments and produce a shortened but functional dystrophin. Four are FDA-approved: eteplirsen, golodirsen, viltolarsen, and casimersen, together covering up to about 29% of the Duchenne population, each targeting a different exon (45, 51, or 53). These have years of real-world safety data now, though effect sizes remain modest and kidney monitoring is required. Rare Disease AdvisorPubMed Central
Beyond dystrophin restoration, Duvyzat (givinostat), an oral HDAC inhibitor approved for ages 6+, targets inflammation and muscle loss rather than the gene itself, offering an option that isn’t mutation-specific. And Agamree (vamorolone), a “dissociative” steroid, was approved as an alternative to traditional corticosteroids, providing similar muscle protection with fewer side effects, addressing a long-standing tradeoff in standard-of-care steroid treatment. Muscular Dystrophy News
Looking ahead, next-generation exon-skippers using antibody-targeted delivery — Dyne Therapeutics’ z-rostudirsen and Avidity Biosciences’ del-zota — aim for roughly tenfold higher dystrophin production than first-generation drugs, with del-zota already in an FDA-authorized early-access program as of late 2025. Muscular Dystrophy News
TOGETHER We Are Changing Lives!
Stories of Gratitude
“Hi! Sage was able to take his wheelchair home from school for the first time ever today! He’s had a motorized wheelchair for 7 years but could only use it at school since we didn’t have a van.
We just went for a walk in the neighborhood, all the way to the end of our street. We haven’t been able to do that in a very long time. We are so grateful. The smile on his face is priceless. Take that, Duchenne!” ~ Ann (Sage’s Mom)
“We are grateful beyond measure for the assistance provided by Walking Strong, Team Joseph, and all of the people who support both organizations. Duchenne is a crummy disease and takes away so much from every person it touches. It’s nice to know that so many of us will be cared for by you. The lasting impact that you have is something to be proud of. You are making a difference in so many lives.“ ~ Laurie Werbow (Ben’s Mom)
Remembering our Dear Friend Kobe Bryant, a true inspiration.
Your light will forever shine on us.
Latest from our Blog
Don’t miss out! Our blog features the newest scientific discoveries, highlights of experiences, and updates on upcoming events.
The LAFC POWER SOCCER TEAM – #7 Team in the Nation!
HEARTS OF POWER The LAFC Power Soccer Team continues to shatter expectations, now proudly ranked as the Number 7 Power Soccer Team in the nation. In just three years, this extraordinary group of six boys with DMD surged through...
Targeted Therapies for DMD
Targeted Therapies Aim at the Root of the Disease At the 2025 Muscular Dystrophy Association Clinical & Scientific Conference in Dallas, Dr. Matthew Alexander, associate professor of pediatric neurology and genetics at the...
A Night of Strength Gala 2024
A Night of Strength Gala 2024 was a Testament to Community and Compassion The Gala was more than just a fundraising event. It was a powerful gathering of individuals united by a shared commitment to supporting families affected...
The LAFC POWER SOCCER TEAM – #7 Team in the Nation!
HEARTS OF POWER The LAFC Power Soccer Team continues to shatter expectations, now proudly ranked as the Number 7 Power Soccer Team in the nation. In just three years, this extraordinary group of six boys with DMD surged through...