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.

Duchenne MD young men who have received assistance from Walking Strong

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

Our Assistance Program directly addresses the overwhelming and vital needs of Duchenne families that often go beyond insurance coverage. We provide crucial support, such as providing medical equipment, service dogs, lifts, ramps, travel aid, and help with purchasing accessible vans, as well as career training for young adults.

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 LASC 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.

The Llauro family

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.

Center for Duchenne Muscular Dystrophy at UCLA
UCLA Reagan Medical Center

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.

Muscular Dystrophy News Today
New Drug approval for DMD

Drug Approval Updates:

FDA Approves the first GENE THERAPY treatment for Duchenne Muscular Dystrophy. Read Muscular Dystrophy Association Celebrates FDA Approval of Sarepta Therapeutics’ ELEVIDYS for Treatment of Duchenne Muscular Dystrophy

 

In recent years, the treatment landscape for DMD has grown exponentially. In 2016, the FDA approved eteplirsen (Exondys 51; Sarepta), a treatment for patients amenable to exon 51 skipping, as the first approved therapy for the disease. Since then, there have been four other approvals, including two agents—viltolarsen (Viltepso; NS Pharma) and golodirsen (Vyondys; Sarepta)—that are indicated for patients with a confirmed mutation amenable to exon 53 skipping. Deflazacort (Emflaza; PTC Therapeutics), a derivative of prednisone, was approved for DMD in patients aged 2 years and older in 2017. The most recent approval came in 2021, with the FDA greenlighting Sarepta’s casimersen (Amondys 45), an antisense oligonucleotide, for patients amenable to skipping exon 45.

The FDA approved Duvyzat from ITC Therapeutics on March 21, 2024, a treatment drug for all DMD patients over 6 years of age to use in conjunction with steroids, helping to delay the progression of the disease and improve muscle health. The projected availability to patients worldwide is Q3 2024.

For more info:
https://www.duvyzat.com/faqs

TOGETHER We Are Changing Lives!

Stories of Gratitude

Young boy with Duchenne MD next his van

“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)

Elliott in his family van
“Oh my goodness, I’m so very grateful and appreciative of each of you and how incredibly generous and amazing you all are! Elliot is super excited and can’t wait to see the new van! I’m over the moon; I can’t begin to express what this means for my family! Thank you all so very much from the bottom of my heart!! Thank you so much for the best Christmas present I could ever ask for! Much love and gratitude.” ~ Denise (Elliot’s Mom)
Ben with his family.

“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.

Alex and Kobe

Latest from our Blog

Don’t miss out! Our blog features the newest scientific discoveries, highlights of experiences, and updates on upcoming events.

Targeted Therapies for DMD

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...

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A Night of Strength Gala 2024

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...

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Did you miss these stories?

Join Us on Social Media for Inspiring Stories! Don't miss a post, follow us today! As we continue our unwavering commitment to empower individuals and families affected by Duchenne Muscular Dystrophy (DMD), we want to invite you...

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Targeted Therapies for DMD

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...

read more