Disabled Newport Beach Teen Brings Musician Friends Together for Duchenne Muscular Dystrophy Awareness

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Friday, November 9, 2012

Newport Beach, — Coalition Duchenne, a Newport Beach based charity that raises funding and global awareness for Duchenne muscular dystrophy is holding a celebration of life and music featuring a diverse bill of local and international talent on November 15, 2011 at Tapas Bar and Grill in Newport Beach. The event will begin at 6:30 p.m.

Dusty Brandom, the 20-year-old son of Coalition Duchenne founder Catherine Jayasuriya, is helping with the event. Dusty who has Duchenne muscular dystrophy and has been wheelchair bound since age ten has fired the charitable passion of the participating musicians who range from his family’s former guitar teacher, Orange County blues legend Pat Hennessy, to Newport Harbor High School alumni, Kings Road featuring Terry Lawless who has recorded and toured extensively with U2.

Also playing on the night, The Lucky Lonely have a strong connection to Dusty and the Brandom family’s struggle with Duchenne. The band’s drummer Michael Bedard (Jordin Sparks Band) accompanied Dusty in Lincoln Elementary School talent show performances. When he was younger, Dusty was an aspiring guitarist and songwriter nurtured by Bedard. Now he does not have the strength to hold a musical instrument.

The Lucky Lonely, Kings Road and others last came together at the Galaxy Theater for Music Power 2011. “It was an amazing event. Dusty had some serious cardiac issues at the time but he spoke and moved everyone,” said Bedard.

Dusty’s 17-year-old brother Lucas Brandom will play bass with Kings Road on some tracks. “It’s great to play for Dusty. This summer we climbed a mountain in Borneo for the second time in two years for awareness and now we are doing this music event. Two friends from Newport Beach joined me on the climb – and they and many others will be at the event.” Brandom is referring to Coalition Duchenne’s Expedition Mt Kinabalu which in August brought together 65 international climbers from 15 countries to climb Mt Kinabalu (13,455ft) the second highest mountain in SE Asia.

Dusty already feels fortunate to reach the important milestone of 20 years of age. Tragically many Duchenne boy’s lives are cut short due to pulmonary and cardiac issues. This year Dusty became the first of his family to vote in a US election. In 2011 Dusty met President Obama in the White House and he hints that may have been his voting preference.

Catherine Jayasuriya, the Coalition Duchenne founder said: “20,000 boys are born each year with Duchenne, more than 50 each day. One afternoon Dusty and I were talking about how great it would be‚Ä®to finally find a cure for Duchenne, so that boys like him could live longer lives. We reflected on the last few years and realized that what we needed most was global awareness and money for research. We decided that moving forward, we are stronger if we all come together as humans, as a force, as a coalition, bringing everyone together. We need to focus on changing the course, taking our quest to another level.”

“It is wonderful that everyone is coming together to support Dusty. He faces tremendous challenges but is buoyed by the spirit in these events. Like last year, the musicians will go into the studio or on tour but I know they will take part of Dusty with them. And Dusty will take some of their music with him.”

The event will feature the first showing of the trailer for Dusty’s Trail – Summit of Borneo. “One of the exciting projects this year is my first movie! My mom took a team of documentary filmmakers this year on Expedition Mt Kinabalu. They also filmed me and other young men with Duchenne here in California,” said Dusty Brandom. The documentary will be released at film festivals in 2013.

Tickets for the Music Power cost $30 (under age 25 is $20) and are available online and at the door.

To buy online go to: http://www.coalitionduchenne.org/html/musicPower.html ;   

Contact:

Cath Jayasuriya
714 8014616
catherine@coalitionduchenne.org

 

Source: Coalition Duchenne

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