This Longhorn Has Been Running for a Cure for Duchenne Muscular Dystrophy for Nearly 20 Years
Faced with his son’s incurable disease, Tim Revell, BS, BS ’99, got busy. Although not a runner, he completed the Austin Marathon in 2006, his first steps in raising awareness for Duchenne muscular dystrophy, a rare but devastating affliction.
Tim’s son Timothy showed early struggles with mobility and was diagnosed with the fatal disease at age 2. With few treatments available, doctors advised the family to simply enjoy the time remaining, which for most who are diagnosed is around 20 years of decline before they succumb to heart failure.
Instead, Tim and his wife Laura, BS ’98, began researching. They were drawn to the California-based nonprofit CureDuchenne, which was formed in 2003 by the parents of a boy suffering from the illness, and partnered with the burgeoning organization with the idea of running a marathon.
“We raised $15,000 that year, just by running in the race,” Tim says.
And he was just getting started. Tim collected $20,000 the following year and started a fundraiser at the UT Golf Club.
With some momentum behind him, Tim—who earned dual bachelor’s degrees in communications from UT—brought his story to an influential figure on campus. Amid an incredible string of 10-win seasons, head football coach Mack Brown was understandably busy.
“It was his wife Sally who got the info and read it and called me on the phone,” Tim says. “They fell in love with our boys, both Timothy and Andrew.”
Tim’s fundraiser at the UT Golf Club was quickly transformed into the Champions to CureDuchenne Gala, the name a nod to Brown’s Longhorns, who played in the 2009 National Championship game that year.
Mack and Sally Brown, Life Members, went on to host the fundraiser for three years before fellow champion Vince Young, BS ’13, Life Member, took over in 2013, hosting the next three events.
Tragedy struck again around that time as the Revells’ second-born son, Andrew, was diagnosed with Duchenne at age 5.
“It became a rallying point,” Tim says. “Why wouldn’t you want to help a kid like this? He’s so full of life. Let’s help keep giving him life.” They were often cheered as Tim would physically carry his sons the final paces of each marathon across the finish line.
Brown enlisted his new philanthropic organization, MJ&M, itself a joint effort that includes country musician Jack Ingram and Matthew McConaughey, BS ’93, Life Member, Distinguished Alumnus. From the onset, CureDuchenne was named one of the five charities to benefit from MJ&M’s fundraising.
“I don’t think we had any clue what we were doing when we started,” Brown told KXAN News in 2018. “And now everything is sold out.”
After 17 straight marathons and more than a dozen annual events, the Revells have helped raise nearly $5 million for CureDuchenne. And the once-tiny organization is now a force for genetic research, with investments at the forefront of treating and seeking cures for the disease.
“We wanted to be laser-focused and strictly taking money and putting it toward the science,” Tim says.
One grant recipient is Eric Olson, the founding chair of the Department of Molecular Biology at UT Southwestern. Brilliant and perhaps eccentric, with a shrine dedicated to Willie Nelson outside his office, Olson has devoted his career to studying the biology of muscle.
Starting with a $5 million investment from CureDuchenne, plus another $40 million in venture capital, he founded Exonics Therapeutics in 2017. Within two years, the company was acquired by pharmaceutical giant Vertex for roughly $1 billion.
“Duchenne is the Mount Everest of muscle diseases—it’s one of the biggest challenges in the gene therapy space,” Olson told the Rare Care Podcast.
To fix the underlying cause of Duchenne, Olson uses a new technique called genome editing, whereby doctors alter a patient’s DNA. Olson believes the technology can correct genetic mutations in up to 80 percent of Duchenne patients and could be applied to other diseases.
Over in Ohio, Nationwide Children’s Hospital takes a slightly different approach. CureDuchenne began funding its research in 2010, and by 2022, they announced a breakthrough. Their use of gene therapy to patch mutated cells has, for the first time in human patients, restored full-length dystrophin protein—the key protein Duchenne sufferers need to strengthen muscles.
“We went from zero clinical trials to now more than 30,” Tim says. “We’ve seen the life expectancy closer to 30, with some living into their 40s.”
It represents remarkable progress in the search for a cure and offers hope to the more than 300,000 worldwide affected by Duchenne, as well as the next one in 5,000 who are born with the disease.
While Timothy and Andrew have each participated in two separate clinical trials, the results were unsuccessful. At 15, Andrew can still walk, but Timothy, now 18, needs help with most tasks.
“He’s learned to persevere. I think he’s one of the toughest people I know,” Tim says. The brothers remain charismatic, outgoing, and full of life.
The boys are home-schooled and can move at their own pace, finding deep interest in art and music. They are huge baseball fans, bringing along a makeshift field to play the sport anywhere they go. In 2021, they traveled to Omaha to watch the Longhorns play in the College World Series and like many, stayed up past midnight to watch their favorite team clinch a spot in the 2022 CWS.
For a huge Longhorns fan who knows Vince, Mack, and McConaughey, Timothy is also a longtime, admitted weather geek who was even more excited to meet another Austin icon: weathercaster Jim Spencer, who has hosted the Champions fundraiser many times and gave the family a tour of the KXAN television studio.
The brothers are planning to be screened this fall for gene therapy treatment, by Sarepta Therapeutics. The procedure does carry risks. “But if it works, there’s a potential that Timothy’s heart could start getting protein, and we could see his life expectancy expanding,” Tim says.
While the boys outgrew the tradition of getting carried across the finish line by their father, he remains running for a cure. With his help, researchers are closer than ever.
CREDITS: Tim Revell, CureDuchenne
Share this article
No comments
Be the first one to leave a comment.