Events help launch muscular dystrophy clinic

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
 
Photo: Photo of Stan Nelson and Carrie Miceli, both UCLA scientists, with their children, Calvin Miceli-Nelson, 16, and Dylan Miceli-Nelson, 9, at their Los Angeles home. Credit: Allen J. Schaben / Los Angeles Times

Comments

[Mindy Cameron]

For more information on the Center for Duchenne Muscular Dystrophy, please see www.cdmd.ucla.edu

For information on the upcoming June 12 Dealing for Duchenne Celebrity Poker Fundraiser, hosted by Chris and Amy Martin and CureDuchenne, to benefit the CDMD at UCLA please see www.dealingforduchennela.cureduchenne.org

[Debra Miller]

From Debra Miller, founder, CureDuchenne:
It’s so exciting to be a part of such a passionate community of parents, scientists and advocates. We’re thrilled for the Nelson/Miceli family and their success with the center at UCLA. In fact, as an organization CureDuchenne is always looking for projects to fund and their Center is at the top of our list.

I want to make sure that readers also know about an exciting national fundraiser we have coming up that anyone can participate in. June 16-20, we’ll be hosting the 2010 CureDuchenne Pick Your Peak, where teams of parents, advocates, community members and friends will be summiting hills, mountains and even climbing to the top of a very tall office building to put some “muscle behind” DMD research.

In California we have teams climbing Mt. Whitney and Mt. Shasta in honor of our sons and teams have formed in Colorado, Tennessee and even Florida. I encourage anyone who is moved by Shari’s story to start or join a team! You can register online at:
http://www.cureduchenne.org/2010/04/register-for-the-2010-climb-to-cure-duchenne-pick-your-peak/