Boston, MA, December 27, 2011 --(PR.com
)-- The Duchenne Alliance and Duchenne Dashboard 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 Alliance was co-founded by leading Duchenne Foundations in an effort to provide continuation of promising Duchenne research. The Duchenne Dashboard is powered by the members of the Duchenne Alliance and provides a web-based conduit to expedite the workflow of Duchenne Foundations and Researchers, allowing greater communication and the ability to share resources in a secure environment. Christine McSherry, President of the Jett Foundation and Carlo Rago, PhD, CEO of OpenOnward, LLC, presented at the prestigious conference, empowering additional Duchenne community members to join the Alliance and Researchers to post proposals that are in need of funding.
“We are thrilled that the Duchenne Dashboard is helping to unite the Duchenne community. International participation is steadily increasing as the Duchenne Alliance expands their global network,” says Carlo Rago, PhD.
Nick Catlin, President of Action Duchenne, explained the importance of the alliance. “The Alliance and the software of the Dashboard are truly speeding time to a cure. They are leading the way to more effective and efficient funding for critical research. It’s imperative for all the Duchenne organizations to work together to end this disease and the Alliance is making this happen. We were grateful for their presence at the conference and that the new funding system that now is supported globally.”
Launched in October of 2011, the Duchenne Dashboard has already facilitated the successful funding of research, treatment and care and has served to reduce duplication of effort. The Dashboard aims to save money and time for participants. “This is good news for young people diagnosed with Duchenne and their families,” says co-founder Christine McSherry of Jett Foundation. Information on the Duchenne Dashboard can be found at www.duchennedashboard.org.
The next critical meeting for the Duchenne Alliance will take place in early March in Boulder, CO. For more information please visit www.duchennealliance.org
OpenOnward builds software systems to expedite the scientific process. The DuchenneDashboard is a networking tool for scientists and foundations to accelerate and enhance the research funding process. Founder Carlo Rago received his PhD from the Cellular and Molecular Medicine Program at Johns Hopkins and completed a post-doctoral fellowship at the Ludwig Center for Cancer Genetics and Therapeutics. His goal is to help identify and fund the most promising research projects and therapeutic strategies for muscular dystrophy. More information can be found at www.openonward.com
About the Duchenne Alliance
The Duchenne Alliance was founded by Duchenne-specific organizations to foster collaboration and optimize funding strategies. The Alliance has a variety of interests that reflect the missions of the members including - but not limited to - basic science, preclinical therapeutics, clinical trials, quality of care, and quality of life. More information can be found at www.duchennealliance.org.
About Duchenne muscular dystrophy
Duchenne muscular dystrophy occurs in approximately 1 out of every 3,600 male births. It is one of the most common and severe forms of muscular dystrophy. Considered a genetic disorder, 70% of the cases have a familial/genetic link, while 30% appear to be by spontaneous mutation. Duchenne is typically diagnosed between 3 and 7 years of age, with the mean year of diagnosis around the age of 5. Duchenne follows a predictable progressive clinical course of muscle weakness. Loss of ambulation occurs by the age of 12 and death generally in early adulthood secondary to respiratory or cardiac failure.
Contact: Christine McSherry
Duchenne Alliance Community Member