We are an alliance of independent Duchenne organizations dedicated to advancing our missions to improve quality of life, care, and treatment of those affected by Duchenne. Our goals will be achieved by building trust, sharing knowledge, leveraging resources, and streamlining business practices. Each organization will be held to achieve their own mission as we collectively serve the entire Duchenne community.

 

Jett Foundation Action Duchenne Cure Duchenne Race MD JB's Keys Ryan's Quest Coalition Duchenne Romito Foundation Darius Goes West Charley's Fund Suneel's Light Zack Heger Foundation Noah's Feat The Foundation for their Sake DMD Fund Parent Project Muscular Dystrophy Team Joseph Misko Foundation Hope for Gus Duchenne Research Fund Hope for Javier Save Our Boy Two Smiles One Hope Foundation to Eradicate Duchenn Hope for Gabe Nash Avery Foundation Foundation for a Future Duchenne Now John Owen's Adventure, Inc. Zubin's Wish Team Saij MDF India Michael's Cause Harrison's Fund Liam's Leep Cure Dale's Duchenne Duchenne San Diego

Join the Alliance

Become a member, participate, empower your Foundation and the entire Duchenne community. The Duchenne Alliance and the Duchenne Dashboard intend to serve as a conduit and accelerant for the workflow that already exists between Foundations. Please read Marissa Penrod's essay, "Why Work Together?"

Articles of Association

Demonstrate your commitment to the principles of the Duchenne Alliance. Although the Alliance is not a legal entity, it is important to unite and declare our purpose. Each Foundation that joins strengthens our effectiveness.
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Participation Agreement

Share resources confidentially while maintaining complete autonomy. One of our most valuable resources is scientific research. As members of the Alliance, we must understand and respect the confidentiality that is required to enable the scientific process
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Your Logo

Powerful images, transformative actions. Associate and Participating members are encouraged to submit their logos to the Alliance.
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Alliance News

Duchenne Alliance Holds Groundbreaking Meeting on Duchenne Muscular Dystrophy, Ignites Revolution in Biomedical Funding

March 11, 2012
Hotel Boulderado, Boulder, Colorado

The Duchenne Alliance, a group of nearly 40 international independent foundations focused on Duchenne muscular dystrophy, has taken a groundbreaking step toward winning what it calls "the ultimate race against time."

The leaders of Duchenne non-profit organizations agreed at a meeting last week on the mass implementation of the DUCHENNE DASHBOARD, an innovative research grant management system that will facilitate an unprecedented level of collaboration among the many foundations, patient advocacy groups, and scientists dedicated to finding treatments or cures for Duchenne. Duchenne is the most common and lethal genetic disease diagnosed in childhood. There are currently no life extending treatment options for the over 300,000 males worldwide living with the condition, which usually limits life expectancy to the mid 20s. Read More

International Duchenne Alliance Annual Conference

March 9th- 10th, 2012
Hotel Boulderado, Boulder, Colorado

"Advancing our missions to improve the quality of life, care and treatment of those affected by Duchenne". - Pledge made by Duchenne Alliance members, March 2011

Greetings International Duchenne Foundations,

Please join us for the first anniversary meeting of the Duchenne Alliance as we harness our collective intelligence and accelerate. Read More

Ryan's Quest provides a travel grant to Johns Hopkins School of Medicine to help recruit patients for the REVERSE-DBMD clinical trial

November 13th, 2011
Hamilton, NJ

The Ryan's Quest Foundation has awarded Kathryn Wagner, MD, PhD, of the Kennedy Krieger Institute, JohnsHopkins School of Medicine, Baltimore, Maryland a $76,500 grant that will ease the financial burden of families who are participating in the REVERSE-DBMD (Revatio for heart disease in Duchenne and Becker MuscularDystrophies) trial.

Funding for the grant was fully pledged within a week of submission to the Duchenne Dashboard.
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Duchenne Alliance invites Global Participation at Action Duchenne Conference

November 5th, 2011
London, England

The Duchenne Alliance took another major step forward presenting at the 9th Annual Duchenne Conference sponsored by Action Duchenne. The international conference for Duchenne muscular dystrophy featured organizations from around the world, representing more than a dozen countries.

"The Duchenne Dashboard was well received at the Action Duchenne Conference in London by leading Duchenne international scientists and clinicians..."
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Duchenne Alliance: An Urgent Call to Action

July 10th 2011
PPMD Duchenne Connect

This meeting served as an open invitation and broad overview to encourage all Foundations to join the Alliance.
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Duchenne Alliance: Optimizing our Opportunity

July 7th 2011
Baltimore, MD

A presentation of the Duchenne Dashboard by OpenOnward and members of the Duchenne Alliance lead to an open discussion that identified several action items.
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The "Epic" Meeting at the Wentworth by the Sea.

March 18th-20th 2011
New Castle, NH

This meeting laid the groundwork to unlock the tremendous human resources and passion that propels the Alliance.
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Resources

Geolocalization of Alliance Resources



Find foundations, scientists, clinics and companies dedicated to conquering Duchenne muscular dystrophy. Put yourself on the map, get coordinated by loading your profile on the Duchenne Dashboard.
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Duchenne Dashboard: A Federated Grant Management System

Join the rapidly growing network of foundations and scientists solving the slow steps in the funding process through enhaced software and collaboration. Foundations identify and co-fund the most promising proposals. Scientists reach the appropriate audience through single portal.
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