APRIL 3, 2012 — The Hope for Gus Foundation has helped establish a new system to better organize scientists and other groups who are looking to cure a lethal genetic disease.

Hope For Gus, a local charity that raises money for research into Duchenne Muscular Dystrophy, joined nearly 40 international independent foundations focused on Duchenne Muscular Dystrophy last month in the second meeting for this groundbreaking group.

“We are doing everything we can to win the ultimate race against time for boys with Duchenne Muscular Dystrophy,” said Foundation president Tonya Dreher.

Steve and Tonya Dreher, co-founders of the Hope for Gus Foundation along with other leaders of Duchenne non-profit organizations agreed 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 and 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.

This tool provides scientists and foundations with a single entry point for proposals to advance Duchenne research. Scientists can use the dashboard to securely submit their projects and member foundations and their scientific advisors can consider and give feedback on them instantly.

The tool also enables foundations to quickly collaborate and contribute funds to promising projects.

“The Duchenne Dashboard is going to radically improve and expedite the scientific process in the field of Muscular Dystrophy. The non-profit foundations came together and set the new standard for effective biomedical funding,” said Duchenne Dashboard creator Carlo Rago of OpenOnward. “The platform is now available to all neuromuscular foundations aiming to conquer disease,” he said.

Hope for Gus was a founding member of The Duchenne Alliance, which held its first meeting in Portsmouth, NH last year. The original goal was to promote better collaboration among the many non-profit organizations around the world committed to conquering Duchenne and improving the lives of those living with this progressive and debilitating muscle wasting condition.

“This level of collaboration is unprecedented,” says Steve Dreher, co-founder of Hope for Gus. “After just one year, we have members all over the US, in Europe, Asia and Australia.  The primary goal of the Alliance is to quickly identify, understand, fund, and implement the most promising research. The fastest way to success is shared knowledge and collaborative funding.”

The Drehers, both teachers at Souhegan High School have seen students sponsor a number of events this year aimed at helping the foundation, named for their six year old son, Gus.

“The support has been amazing,” said Steve. “Students organized a football fundraiser in the fall, a fashion show fundraiser this winter and we’re looking forward to a, also organized by students. We couldn’t ask for a more supportive community.”