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Taking Notes:

Breaking through to find Duchenne cure

October 16, 2008|By TONY DODERO

A recurring topic in this column is the status of CureDuchenne, a group started by a local mom, Debra Miller, as a way to find a cure for the particular strain of muscular dystrophy with which her son has been diagnosed.

I reported in January about a breakthrough in this disease by the Netherlands drug company Prosensa.

Prosensa’s breakthrough treatment for Duchenne muscular dystrophy was largely made possible through a $1.3-million grant from Miller’s nonprofit group.

I continue to keep tabs on her efforts largely because I admire the heck out of her.

As a father of three, including a young son (Duchenne afflicts only boys), I cheer for Miller every day.

I want her to win this battle and save her son and others from this dreaded disease that basically ravages the muscles of young boys as they enter their teenage years.

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So why am I bringing this up again?

Well, obviously $1.3 million isn’t all that is needed to whip this disease, as even more money has been doled out to other research groups. So those of you who also feel like I do can help in a big way by attending the annual CureDuchenne gala Oct. 25 at the Balboa Bay Club.

Miller promises that it will be a fun night for all involved, and from what she told me, she’s not kidding.

The event will feature live music by Jerry Velasco and the Sentimentalists and a performance by a new teen group, Runway MMC. There will be dinner, dancing, a blackjack tournament and a live and silent auction with some amazing prizes.

We’re talking Super Bowl tickets, a Montage Spa package, a Napa wine country getaway by private jet, backstage passes to Jimmy Kimmel’s TV show, a Zamboni ride at a Ducks game, lunch at the Disney Animation Studios, five nights at the Westin Cancun and a super secret prize that let’s just say would make any young teen girl the envy of all her friends.

The money raised will continue to go straight toward research for a cure to Duchenne muscular dystrophy. Total fundraising for the group has hit the $5-million mark, and Saturday’s event will move the needle more.

To make a reservation for the event, which goes from 6:30 p.m. to midnight, go to www.Cureduchenne.org. So go have fun and help save the lives of some boys in the process.

For those of you who attended or watched last night’s candidate debate at Costa Mesa City Hall, I thank you.

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