From the Oval Office to the Galaxy Theater in Santa Ana, Disabled Newport Beach Teen Works Tirelessly for Duchenne Muscular Dystrophy Awareness
Coalition Duchenne presents Music Power at 7 p.m. on 11.11.11 featuring great OC bands and musicians who have played with Santana, Alicia Keyes, Jordin Sparks, Ne Yo, Jonas Brothers, U2 and more to raise global awareness for Duchenne, the most common fatal childhood genetic disease
On November 11, 2011 at 7 p.m., at the Galaxy Theater in Santa Ana, Coalition Duchenne, a Newport Beach Based charity that raises funding and awareness for Duchenne muscular dystrophy is holding a celebration of life and music featuring a diverse bill of local and international talent.
Dusty Brandom, the 18-year-old son of Coalition Duchenne founder Catherine Jayasuriya (seen in the photo at the top of this post), is hosting 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 younger brother’s band, Final Crush to local favorites, and 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 (American Idol Jordin Sparks) 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.
Long time family friend Michael Olivieri is also playing with his band M.O.B. featuring past members of Santana, Scorpions, Social Distortion, Walter Trout Band, the Turtles, Rhythm Lords, and others. Michael was the driving force behind the success of seminal major label hard rock band, Leatherwolf.
One of the most acclaimed Orange County acts is also donating his talents. The Los Angeles Times said Michael Ubaldini (pictured on left) is ‘Better than Springsteen at probing the national soul’. He has won numerous awards such as: 2005 and 2006 Best Roots, Best Male Performer in the Orange County Music Awards and Best Live Performer/Songwriter in the Los Angeles Southern California Music Awards and his recording Portable Record Player was Nominated for Album of the Year in the OC Music Awards and named one of the best releases of the decade by Ben Wener of the OC Register.
MC for the event is Scotty Granger, keyboard player and vocal accompaniment for Jordin Sparks. Scotty featured recently in Kara Dioguardi’s ‘Platinum Hit’ (Bravo).
Completing the lineup is family friend Dave (Doc) Pittillo and his band Space Rockets. Doc owns the Guitar Doctor in Fountain Valley and is a ubiquitous presence in the OC music scene as one of the countries premiere luthiers.
Dusty’s 16-year-old brother Lucas Brandom who plays bass for opening act Final Crush said, “It’s great to play for Dusty. This summer we climbed a mountain in Borneo for awareness and now we are doing this concert. We just do everything we can.” Brandom is referring to Coalition Duchenne’s Expedition Mt Kinabalu which in August brought together 35 international climbers from nine countries to climb Mt Kinabalu (13,455ft) the second highest mountain in SE Asia.
Dusty and his family made the most of 2011. In addition to travelling to Borneo, in June he travelled with his family to Washington D.C. to visit President Obama. The trip was arranged by the Orange County Chapter of the Make A Wish Foundation. “It was exciting. We had an all access tour of the White House ending up outside the Oval Office. Hilary Clinton came out from meeting with the President and said ‘Hi’. Then the President said: ‘Come on in Dusty, I’ve heard all about you’. We spent 20 minutes with President Obama and told him all about Duchenne and our family background and adventures.”
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 cool it would be 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.” Said “We decided that moving forward, we are stronger if we all come together as humans, as a force, as a coalition, bringing together not just Duchenne charities, but everyone. 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 has is buoyed by the spirit in these events. After this the musicians will all go into the studio or on tour. I know they will take a bit of Dusty with them. Meanwhile Dusty will be checking into the CHOC ICU as his doctors introduce new heart meds. He will take some of their music with him.”
Tickets cost $20 and can be purchased online (www.galaxytheatre.com). The event also will include a raffle. Sponsorship opportunities are available.
Jayasuriya founded Coalition Duchenne in 2010 (www.coalitionduchenne.org) 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.
Duchenne muscular dystrophy is a progressive muscle wasting disease. It is the most common fatal 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 mid 20's. Their minds are unaffected.
For more information on the benefit concert, visit: http://www.coalitionduchenne.org/html/musicPower.html
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