HACKENSACK, N.J., April 27, 2015 /PRNewswire-USNewswire/ -- Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), and Duchenne Parent Project NL based in the Netherlands, will host an international robotics workshop today in London. In the last few years, several technology companies and engineers have begun to explore assistive devices that could potentially help people living with Duchenne. This workshop will bring many of these companies together to share their products and progress with leading Duchenne-specific patient advocacy groups.
Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood. The condition affects approximately one in every 3,500-5,000 live male births. Duchenne is caused by mutations in dystrophin, a key protein in muscle signaling pathways. As Duchenne progresses and muscles weaken, people with Duchenne lose many of their basic motor functions, and in turn, their independence. Now companies are interested in developing products that would relieve the burden to these muscles, hopefully slowly the progression of the deterioration, allowing patients to maintain independence and strength for longer.
Topics at the meeting will include existing technologies, new technologies, measuring results, and what the future of adaptive devices look like. PPMD and Duchenne Parent Project will also use this meeting as an opportunity to provide engineers with some of the most important issues facing patients and their families.
Founder and President of Duchenne Parent Project NL, Elizabeth Vroom is looking forward to the workshop: "We are all very excited to have experts from the US and Europe coming together to see how we can collaborate to speed up the developments of these technologies!"
PPMD recently launched a Robotics Initiative. Both PPMD and Duchenne Parent Project NL have been early funders of several robotic programs that strive to improve the quality of life for people with Duchenne. With an increase in the number of companies and technologies coming into the Duchenne space with products aimed at helping people with Duchenne, PPMD decided to put together a fundraising campaign to fund this critical research.
PPMD Founding President, Pat Furlong said, "PPMD supports innovation. We're excited because the technology we are supporting and the proposals we are reviewing with this new initiative, span the needs of the entire Duchenne population. We believe robotic technology will spare muscle deterioration keeping people with Duchenne stronger for longer. Our Robotic Initiative explores devices that have the potential to assist everyone living with Duchenne. We are excited to co-host this incredible meeting today with Elizabeth Vroom and the Duchenne Parent Project NL team."
To learn more about PPMD's Robotics Initiative, click here.
About Duchenne Muscular Dystrophy
Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in every 3,500-5,000 live male births (about 20,000 new cases worldwide each year). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.
Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells undergo degeneration. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties.
Duchenne can be passed from parent to child, but approximately 35 percent of cases occur because of a random spontaneous mutation. In other words, it can affect anyone. Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne.
About Parent Project Muscular Dystrophy
Duchenne is a fatal genetic disorder that slowly robs young men of their muscle strength. Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—our mission is to end Duchenne.
We invest deeply in treatments for this generation of young men affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite and educate the global Duchenne community.
Everything we do—and everything we have done since our founding in 1994—helps boys with Duchenne live longer, stronger lives. We will not rest until every young man has a treatment to end Duchenne. Go to www.ParentProjectMD.org for more information or to learn how you can support our efforts and help families affected by Duchenne.
About Duchenne Parent Project NL
Duchenne Parent Project NL was set up by Duchenne parents who decided to shoulder responsibility and become an active partner in the development of viable treatments or a cure for this disease. They became funders, advisors, and lobbyists. Duchenne Parent Project NL funds research projects around the globe and has funded around 100 research projects in Academia as well as in Industry. Duchenne Parent Project has played a role in raising awareness, the development of outcome measures, standards of care, initiated new developments, and facilitates collaborations. Learn more by visiting www.duchenne.nl.