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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.
Our Goal: Through our efforts, we aim to ignite hope, drive progress, and build a future where every person impacted by Duchenne can thrive.
Walking Strong Assistance Program helps Duchenne families with their overwhelming medical needs that are most often not covered by insurance.
The Duchenne Coaching Program is here for caregivers and patients 24/7 absolutely free.
(Pronounced “Du Shen”)
Duchenne is the most common fatal, genetic childhood disorder, which affects approximately 1 out of every 5,000 boys each year worldwide. It currently has no cure. Diagnosis occurs around 3 – 5 years of age, usually the first sign is muscle weakness and large calf muscles.
The Duchenne gene is found on the X- chromosome and occurs mostly in boys which progressively degenerates all their muscles over time including the heart and the lungs. It is carried through the mother and often times is a spontaneous mutation and does not run in the family. Duchenne does not discriminate and occurs within any racial, ethnic or economic background.
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. A leading group of UCLA scientists, clinicians and researchers is poised to achieve significant advances in research, clinical care and treatments for Duchenne that are improving, and will potentially extend, the lives of those afflicted.
Researchers have developed a gene therapy for DMD, using an adeno-associated virus, which does not cause human disease, to deliver a smaller form of the dystrophin gene to the muscle cells. Watch the video Micro Dystrophin Gene Therapy for Duchenne Muscular Dystrophy to Learn About Gene Therapy.
The FDA approved Duvyzat from ITC Therapeutics on 3/21/24 which is a treatment drug for all DMD patients over 6 years of age to work along with steroids to help delay the progression of the disease and increase muscle health. The projected availability to patients worldwide is Q3 2024.
For more info:
https://www.duvyzat.com/faqs
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