Duchenne Alliance

Posted by John Campbell on March 23, 2011

Dear Duchenne Community Member,

This past weekend, over a dozen Duchenne organizations came together in New Castle, New Hampshire. Our goal was simple: to find a way to work together and use our collective resources to find treatments and a cure for Duchenne muscular dystrophy.

While we weren’t able to work out every detail, the conference laid the framework for a Duchenne Alliance, a new era of collaboration in the fight against Duchenne. We believe the Duchenne Alliance will revolutionize our work, and we hope you will join us. We intend to move swiftly, and we feel strongly that your participation will strengthen our common cause.

In the coming days and weeks, we will have more information about how the Duchenne Alliance will encourage research by streamlining and standardizing research grant proposals, how it will change the way we learn from each other and how it will give this group of small but dedicated organizations the leverage we need to create real progress this year.

This alliance is still very much a work in progress. We are working to refine our mission statement and purpose and would like your input. We identified and created task forces for:

1. Funding and Messaging
2. Working with the MDA
3. Creating a Research Database
4. Research of Other Collaboration Models

We are creating a list of all organizations dedicated to maximizing the collective resources within our community. We would like to work with you to aggressively apply these resources to the discovery of treatments and a cure for Duchenne.

For more information, please comment or email.

Thank you,

Christine McSherry
Dave Schultz
Members, Duchenne Community