Newport Mom Hopes To Conquer A Mountain And A Disease

By Tony Dodero

Debra Miller is on a mission.

In about a month and a half, this Newport Beach mom will be climbing one of the tallest peaks in North America, hoping to raise money for one simple cause: to save her son’s life.

In truth, by climbing Mt. Rainier in the state of Washington on Aug. 30, Miller could well be saving the lives of many boys for years to come.

Miller’s son has Duchenne muscular dystrophy, which afflicts young boys and takes their lives by the time they reach their 20s. She founded the nonprofit agency CureDuchenne after becoming frustrated with muscular dystrophy groups that focused more on giving comfort to the sick and less on finding ways to eradicate the disease.

Since its inception, CureDuchenne has raised millions toward research and in fact witnessed major breakthroughs in drug treatment thanks to donations made toward curing the disease.

Now, she’s bucking for even more cash by taking to the hills. A team of 12 people are climbing the mountain with her, each hoping to raise $14,411. If they do that, it means $172,932 going directly to research, Miller said.

One sponsor, Advanced Turbine Support Inc., donated $25,000 to cover all of our mountaineering and travel expenses, Miller said. Further, Ruby’s Diner has offered to place donations canisters in their Washington state and Orange County locations.

“We will really be pushing to make our goal in this last month,” she said. “There are actually drugs that show promise of saving boys with Duchenne. The faster we can fund the research, the more will be saved. I always try to make people think: What would you do if it was your child? Would you do whatever it took to save him? Would you pray that others would help you?”

And what about climbing that mountain?

“I signed up for this knowing very little about mountain climbing in general and even less about the challenging and technical nature of climbing Mt. Rainier,” Miller said in an email. “Our son will be at the base of the mountain when we come down, and mostly all I can think about is seeing his face and hoping that all the effort, time and pain will result in research that will enable him to have a quality of life, even though he’ll never climb a mountain.”

Miller got the idea for climbing Mt. Rainier from Bill Procko, a Florida man whose son is also battling the disease.

“He’d tried to summit Rainier before and couldn’t because of weather,” she said. “He always wanted to reach the top and when his son was diagnosed with Duchenne, he felt this was a good way to raise awareness. With one email blast, we quickly filled all the spaces that the mountaineering company had available. We have five parents of Duchenne boys, a biotech executive, a scientist, two rock stars, a film maker, a philanthropist and CureDuchenne’s business development manager going.”

So has she been training for that mountain climb?

“Not enough!” she said. “My husband Paul has been on a rigorous training program for a couple of months … I’m riding the spin bike when I can and we’ve done a couple of practice hikes on Mt. Baldy … I have 45 days to get in peak shape. I think I can do it. I’ve trained enough on Mt. Baldy to experience altitude sickness, and that’s only 10,000 feet compared to 14,411 to summit Rainier.”

For those interested in donating to the climb, go to the website www.cureduchenne.com for more information. Or print out this coupon. Take to the Corona del Mar Ruby’s the week of July 27-31 and Ruby’s will donate 20% of your bill to CureDuchenne’s climbing team.