DUCHENNE ALLIANCE HOLDS GROUNDBREAKING MEETING ON DUCHENNE MUSCULAR DYSTROPHY, IGNITES REVOLUTION IN BIOMEDICAL FUNDING
Hope for Gus is a proud member of the Duchenne Alliance, a consortium of Duchenne focused foundations all working together for a cure. We work with researchers and collaborate with other foundations to fund important and promising research.
Boulder, CO, March 11, 2012 – 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 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.
The Duchenne Dashboard 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.
The Duchenne Alliance was formed last year 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. “The primary goal of the Alliance is to quickly identify, understand, fund, and implement the most promising research,” said Steve Dreher of the Duchenne non-profit Hope for Gus. “The fastest way to success is shared knowledge and collaborative funding,” she said.
About the Duchenne Alliance: 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. Please visit www.duchennealliance.org.
About OpenOnward: We employ open science solutions that empower individuals, groups and societies. Our core products were developed to expedite the entire scientific process by facilitating deeper, more meaningful connections between scientists and society. Our team consists of leaders in biomedical research and open science. We are dedicated to the greater good. Find us on the web at www.openonward.org.