Saving lives one step at a time
For years people around the country have been climbing mountains for CureDuchenne.
As they raise money and awareness, they also get younger.
Most recently, 8-year-old Tyler Armstrong climbed Mt. Kilimanjaro and helped raise about $40,000 for the Newport Beach-based charity fighting Duchenne muscular dystrophy.
Tyler is the second youngest to climb the 19,336-foot peak in Tanzania, Africa. He and his team, along with another team including CureDuchenne co-founder Paul Miller, climbed the peak from June 25 to July 2.
The Yorba Linda youth has many climbs under his belt. He is the youngest to climb Mt. Whitney in one day, and according to his website, would like to climb inArgentina’sMt. Aconcagua, the tallest peak in South America. The record is held by a 10-year-old.
He said he got interested when he saw a video of his dad climbing Mt. Whitney.
“I told him I wanted to do that,” Tyler said. “He thought I was joking. I wasn’t really.”
The Kilimanjaro climb was part of an annual fundraiser for CureDuchenne. A note on the website asks people to “Climb to CureDuchenne,” and suggest you “Pick Your Peak.”
Though not well known, Duchenne muscular dystrophy has an incident rate of 1 in 3,500 live male births and has no cure. Boys with the disease have progressive muscle weakness and degeneration. The symptoms begin in the preschool years and the disease is usually diagnosed when a child is about 5 or 6. There are reportedly more than 24,000 boys with the fatal disease in the United States.
“They can’t walk or do any of the things they want to do, like soccer,” Tyler said.
Co-founder and President Debra Miller, whose 15-year-old son was diagnosed when he was 5, said in 2009 a dad in Florida called up and suggested they do a climb to raise money.
They first climbed Mt. Rainier with a team of 12 — including Debra and Paul Miller — and raised about $250,000. It was the first of an annual, national, climb-oriented fundraiser for the charity. CureDuchenne’s “elite” climbing team subsequently hiked Mt. Shasta, the Grand Tetons and Kilimanjaro.
“This year they started talking about Kilimanjaro,” Debra Miller said. “Then they met Tyler and his dad and they had also decided on Kilimanjaro. It was almost meant to be.”
Debra said Kevin Armstrong, Tyler’s father, was adamant that the boy make his own decision about whether to make the climb in CureDuchenne’s name. She said Tyler went to Sunday school, prayed about it and said, “I want to climb for CureDuchenne.”
A separate climb striving for the same goal took place in Tennessee on June 30 to July 1. A trio of dads who have sons with Duchenne climbed the highest peak in the Smoky Mountains.
Other locals hiking in support
But it isn’t just people looking for a hard core ascension who take to the trails for CureDuchenne.
There have been smaller climbs in Riverside and Pasadena. In June, a group of Orange County residents climbed Quail Hill in Irvine, according to CureDuchenne Marketing Director Karen Harley.
What they lacked in elevation they made up for in numbers, attracting about 100 participants. According to the website, Orange County resident Tiffany Cook, whose 12-year-old son was diagnosed with Duchenne when he was 7, organized the hike.
The annual climbs, several galas and other fundraisers throughout the year earn CureDuchenne about $2.5 million a year. According to Debra Miller, for the past nine years the money has gone toward research and public awareness.
“We have seven research projects in human clinical trials,” she said.
She also said having a panel of scientific advisors as well as a legal team as part of the charity gives them greater ability to hold people accountable.
Debra Miller said when she and her husband decided to raise money for Duchenne they didn’t want to fund a bit here and a bit there.
They were able to partially fund a Dutch biotech company, Prosensa, they found promising, she said. They promised $1.3 million in funding though they had $10,000 in the bank at the time.
According to Prosensa’s website, CureDuchenne promised the money in 2004. Apparently CureDuchenne scientific advisors weren’t the only ones who found Prosensa’s work promising. In 2010 pharmaceutical company GlaxoSmithKline promised up to $650 million in funding, according to Debra Miller.
This sort of research funding makes awareness so important to Miller. She said if the cause was cystic fibrosis the research money would be easier to come by.
“The first time I heard the word Duchenne was when I was told my son had it,” Miller said.
She said it used to be lumped with many other complications listed as muscular dystrophy before they knew how different they all were.
“Now that they know the causes they know they are totally unrelated diseases,” she said.
The next CureDuchenne fundraiser is the second annual Getzlaf Golf Shootout at Monarch Beach in Dana Point Sept. 8 and Sept. 9 with a pre-golf dinner reception at Sutra in Costa Mesa that Saturday. For information, call CureDuchenne at (949) 872-2552.
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