KINGSTON, Mass., Sept. 6, 2016 /PRNewswire-USNewswire/ -- Today, Jett Foundation, a 501(c)(3) committed to meeting the unmet needs of patients and families affected by Duchenne muscular dystrophy (DMD), announces its event "Shine a Light on Duchenne" — an evening to honor World Duchenne Awareness Day 2016 — to be held at the Royal Sonesta Hotel in Cambridge, Massachusetts on September 7, 2016, 6 to 8 p.m. EST.
Duchenne is a progressive muscle disorder that causes loss of muscle function and independence and is the most common lethal genetic disorder diagnosed during childhood. It affects approximately one in every 3,500 children — mostly boys but some girls — or 20,000 babies born worldwide each year.
World Duchenne Awareness Day is a global initiative to bring attention to Duchenne and the importance of an early diagnosis. Cambridge — an epicenter for innovation, discovery, and hope for Duchenne and rare disease research — is a fitting location for the event. Nearly 250 patients and families affected by the disease, expert researchers and healthcare providers, representatives of the Massachusetts state and federal delegations, and employees of biopharmaceutical companies working in the Duchenne space are expected to attend. Christine McSherry, executive director of Jett Foundation, and Robert Coughlin, president and CEO and of the Massachusetts Biotechnology Council, are slated to speak in person, and Massachusetts Governor Baker will make a short speech via video recording.
Three hundred lanterns will be lit along the Paul Dudley White Bike Path along the Charles River, coinciding with a moment of silence in remembrance of those individuals who have passed away from Duchenne and the deaths that the patient community suffers every day from the devastating progression of this debilitating disease.
Members of the general public and the media are encouraged to attend. Follow along on social media using the hashtags #WDAD2016 and #DuchenneCambridge.
About Duchenne muscular dystrophy
Duchenne is a progressive neuromuscular disorder that causes a loss of motor, pulmonary, and cardiac function, and premature death. It is the most common lethal pediatric genetic disorder, and it affects every one in 3,500 live male births and some females. Duchenne is caused by the body's inability to create dystrophin, a large protein found in muscle cells. Duchenne has no FDA approved treatment or cure and is 100 percent fatal. Children with Duchenne are born normal and decline over time, usually losing their ability to walk around the age of 12 and succumbing to the disease in their early to mid-twenties.
About the Jett Foundation
Since 2001, Jett Foundation, located in Kingston, Mass., has worked to find treatments and a cure for Duchenne muscular dystrophy (DMD) while improving the lives of those affected by DMD. The Jett Foundation is a registered charity with 501(c)(3) status from the IRS; all donations are tax deductible. www.jettfoundation.org.
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SOURCE Jett Foundation