By reaching out we are making a connection to these families. We want them to know that they are not alone and that we care.
NEWPORT BEACH, Calif. (PRWEB) November 23, 2017
The eclectic restaurant and live music and art venue known as the Boathouse Collective in Costa Mesa resonated Saturday with the international sounds of the sitar, tablas, and fingerstyle acoustic guitar as it hosted the inaugural "Music Without Borders" event. The international theme was consistent with the goal of Duchenne Without Borders, supporting underserved Duchenne families worldwide. Duchenne Without Borders began as an outreach initiative of the charity Coalition Duchenne. Catherine Jayasuriya founded Coalition Duchenne in 2011 with her now 25-year-old son Dusty Brandom to raise global awareness for Duchenne muscular dystrophy, to fund research, and to find a cure for Duchenne.
Event organizer Lucas Brandom, Dusty’s younger brother, said, “Two of the main things that inspire me are music and my brother, so it was natural for me to create this event. It is wonderful that so many people came together to share this with us.”
The vision of Duchenne Without Borders is to distribute Ambu bags and bipap machines to boys with Duchenne in communities around the world, and to provide information on treatment protocols, drugs, and research initiatives that are readily available in the United States and other developed countries.
The Ambu bag (Artificial Manual Breathing Unit or manual resuscitator or “self-inflating bag”) has the potential to improve pulmonary function in boys and young men with Duchenne through a breath stacking exercise.
The inspiration behind Duchenne Without Borders was a boy from rural Sabah, Malaysia named Azmi (1998-2017). Duchenne Without Borders founder Catherine Jayasuriya met Azmi in 2012 when filming her award winning documentary about Duchenne, "Dusty's Trail: Summit of Borneo."
Duchenne Without Borders has reached out to boys with Duchenne in Sabah, Malaysia, the Philippines, and Algeria. Duchenne Without Borders is moving quickly to develop relationships and expand this initiative to other countries with collaborations in India, Nicaragua, and Laos. Catherine said, “By reaching out we are making a connection to these families. We want them to know that they are not alone and that we care.”
Taking the stage at the Boathouse Collective were two Southern California musicians, Aloke Dasgupta and Donavan Raitt, who although seemingly worlds apart in their choice of instrument found common ground for a global cause.
Aloke Dasgupta is one of the most outstanding and original sitar players in the North Indian classical style. A student of the renowned Indian Musician Ustad Ali Akbar Khan, Aloke has become a teacher himself and runs a music school called Raja Ranjani, which means, “music that makes you happy.” In a storied international career, Aloke has toured extensively, featured in film and television, and played for Mick Jagger, Ozzy Osbourne, and Gwen Stefani. Sitar has deep meaning for Aloke. He says, “The human ear can only hear sounds within a certain range. Beyond that range the universe is full of music that the ear cannot hear. For an Indian musician, one of those goals is to hear that universal song.”
A spiritual connection with music resonates for guitarist Donovan Raitt, who serves as adjunct professor of Guitar and Music Technology and Worship Arts in the music department of Concordia University, Irvine. Donovan is part of a vanguard of North American artists reinventing acoustic fingerstyle guitar with percussive rhythm and esoteric tunings to create moving music. Donovan is a master’s graduate of the Cole Conservatory of Music at California State University, Long Beach. His most recent original solo guitar album, Pursuing the Horizon, was produced and recorded in Montreal, Quebec, by fingerstyle guitar legend Antoine Dufour.
The two artists, with Aloke accompanied by tabla player Anjan Mukherjee, entranced the large crowd including three young men with Duchenne, Dusty Brandom, Chris Cassidy, and Ryan Rang.
“It is heartwarming that these guys with Duchenne who face such challenges in their everyday life care about those less fortunate in other countries,” said Catherine.
Chris Cassidy, originally from Virginia and now a PhD student at the University of California, Irvine, told the crowd how he was able to attend university independently and benefit from high quality medical care. “Many boys and young men in other countries cannot hope to do the things we can do here in the United States. We need to show them that we care,” he said.
Music Without Borders was sponsored by Capricor Therapeutics, Cedars-Sinai Medical Center, Sarepta Therapeutics, and PTC Therapeutics.
About Duchenne Without Borders
Duchenne Without Borders is an offshoot of Coalition Duchenne. Catherine Jayasuriya founded Coalition Duchenne with her now 25-year-old son Dusty Brandom in 2011 to raise global awareness for Duchenne muscular dystrophy, to fund research, and to find a cure for Duchenne. Coalition Duchenne and its founders have been leaders in sponsoring Duchenne research for over 16 years. Coalition Duchenne has several groundbreaking research initiatives that are making advances in potential cardiac and pulmonary treatments for sufferers of Duchenne.
For more information about Coalition Duchenne, please visit http://www.coalitionduchenne.org.
Duchenne Without Borders is Coalition Duchenne’s outreach initiative and supports underserved families and boys with Duchenne worldwide. Duchenne Without Borders has already reached out to families with Duchenne in Sabah, Malaysia, the Philippines, and Algeria, and provided them with Ambu bags and bi-pap machines. Duchenne Without Borders has also provided information about Duchenne to doctors and families in these areas.
About Duchenne muscular dystrophy
Duchenne muscular dystrophy is a progressive muscle wasting disease. It is the most common fatal disease that affects children. Duchenne occurs in one 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 mid to late 20's.