Events help launch muscular dystrophy clinic
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Boys in the Los Angeles area with the genetic disorder muscular dystrophy will soon have a clinic to attend that does not require long-distance travel. The UCLA Muscular Dystrophy Clinic is slated to open later this year. The efforts to open the clinic, which began when two UCLA scientists learned their youngest son had the disease, are described in Monday’s L.A. Times story, ‘A personal fight against a lethal childhood illness.’
But several families have come together to make the clinic possible. Seven year ago, Paul and Debra Miller founded CureDuchenne, a national nonprofit advocacy group based in Newport Beach. The organization has focused much-needed attention on the plight of local MD families. CureDuchenne was aided by Chris and Amy Martin, a Los Angeles couple who have organized yearly fundraisers that have raised $200,000 for the clinic. The third-annual ‘Dealing for Duchenne Los Angeles Celebrity Poker Tournament’ will be held June 12 at the Petersen Automotive Museum. Proceeds will benefit the clinic.
The efforts come at an opportune time, said Dr. Eric Hoffman, a leading researcher on the disorder at Children’s National Medical Center in Washington.
‘It’s the best place the field has been in since I’ve been involved,’ he said. ‘There’s a lot of progress in clinical trials.’
-- Shari Roan