Newport Beach, California (PRWEB) November 01, 2015
A Newport Beach family features on the 26th anniversary edition of the inspirational CBS television show Courage in Sports, airing Sunday November 1, 2015, at 5PM EST. In the show, Newport Beach mother Catherine Jayasuriya leads an annual climb on Mt Kinabalu in Malaysian Borneo to honor her son Dusty Brandom who has Duchenne muscular dystrophy, the most common fatal childhood genetic condition.
Courage in Sports producer Jill Leibowitz was inspired to include Catherine and Dusty’s story after watching Catherine’s 2013 feature documentary Dusty’s Trail: Summit of Borneo. The film featured in film festivals worldwide and garnered several awards. It recently secured distribution by Cinema Libre Studios, based in Burbank.
Catherine is the founder and executive director of Coalition Duchenne, a Newport Beach based charity committed to raising awareness about Duchenne muscular dystrophy and funding for research.
“The crew of Courage in Sports interviewed us, and also got footage of our annual climb in Borneo,” said Catherine.
Dusty was just like all the other boys when he started school at Carden Hall School in Newport Beach, but he quickly lost the ability to run and was in a wheelchair by the time he completed elementary school at Lincoln Elementary in Corona Del Mar. Dusty graduated from Corona Del Mar High School and now attends the University of California, Irvine. He is 23-years-old.
“Dusty is a happy young man with a great smile, and he is a daily inspiration to our family. Young men like Dusty lose their physical ability, but their minds are not affected and are full of dreams,” said Catherine.
Dusty has taken part in drug trials that may result in the first Duchenne specific drugs to be approved by the FDA next year. “The boys and young men give so much of themselves trying to move the science forward on Duchenne. Dusty has had multiple muscle biopsies and blood draws, and he has travelled across the country many times for FDA trials,” said Catherine. “We have developed strong relationships with scientists and doctors who are involved with Duchenne, because we realized soon after Dusty was diagnosed that it was going to take a concerted effort from many stakeholders to fulfill our mission of finding treatments and a cure.”
Coalition Duchenne is honoring one of its collaborators, cardiologist and researcher Dr. Ron Victor of the Cedars-Sinai Heart Institute, with the charity’s annual Lotus Award for his contribution to Duchenne research. The award will be presented at the Charity’s 5th annual Night at the Museum to be held at the Marconi Automotive Museum November 13, 2015. Tickets are available for the event.
About Coalition Duchenne
Coalition Duchenne (http://www.coalitionduchenne.org) was founded in 2011 to raise global awareness for Duchenne muscular dystrophy, to fund research, and to find a cure for Duchenne. Coalition Duchenne is a 501c3 non-profit corporation. Its vision is to change the outcome for boys and young men with Duchenne, to rapidly move forward to a new reality of longer, fulfilled lives by funding the best opportunities for research and creating awareness. The founders of Coalition Duchenne funded studies and research that is at the core of therapies being brought to market for Duchenne by Sarepta Therapeutics, PTC Therapeutics, and Biomarin in the coming months.
Coalition Duchenne has several new research initiatives that are making advances in potential cardiac and pulmonary treatments for those with Duchenne and other muscle weakening conditions. It’s funding of research at Cedars-Sinai Medical Center in Los Angeles, California led by Eduardo Marbán MD, PhD of Cardiac-Derived Stem Cells is moving to trials through Los Angeles based biotech Capricor Therapeutics.
About Duchenne muscular dystrophy
Duchenne muscular dystrophy is a progressive muscle wasting disease. It is the most common fatal genetic disease that affects children. Duchenne occurs in 1 in 3,500 male births, across all races, cultures, and countries. Duchenne is caused by a defect in the gene that codes for the protein dystrophin. This is a vital protein that helps connect the muscle fiber to the cell membranes. Without dystrophin the muscle cells become unstable, are weakened, and lose their functionality. Life expectancy ranges from the mid teenage years to the 30’s.
About Courage in Sports
Developed by Chicago-based Intersport, Courage in Sports is entering its 26th year of celebrating the most incredible athletes in the world. Traditionally a one-hour television special aired each fall, this program highlights powerful stories of courage, resilience and excellence in the face of adversity. More than 100 stories have been explored since the first Courage in Sports aired 25 years ago.
About Intersport
Since 1985, Intersport (http://www.intersportnet.com) has been an award-winning innovator and leader in the creation of sports and entertainment-based marketing platforms. Intersport creates unique content and experiences for clients that attract and engage passionate audiences through three divisions: Sponsorship & Event Marketing, Sports Properties, and Sports & Entertainment Content (for broadcast and digital media, including CelebTV.com).