BILLINGS — Cattle auctions are a familiar sight in Montana, where crowds gather for profit, but one event in Billings last week was a sale for progress.
The seventh annual Calves to Cure DMD charity cattle auction at the Billings Livestock Commission on Thursday raised funds to help fund research for Duchenne muscular dystrophy, a rare and aggressive genetic disorder with no known cure. It's something 11-year-old Grant Heaton of Worden lives with.
Watch how one Worden family is making a difference in finding a cure for a rare disease:
“It's a disease, a muscle disease, where over time my muscles break down to scar tissue,” said Grant. “Every year, we just get donations from people with their cows, do a sale, and we sell raffle tickets for a new gun."
Grant was diagnosed with Duchenne at just 3 years old. The disease causes progressive muscle degeneration and affects about 15,000 boys in the United States. Most are wheelchair bound by their teens and have a life expectancy of under 30.
After finding out his diagnosis, his parents, Laura and Paul Heaton, were determined to find a cure.
“He's a regular, knot-headed 11-year-old. You know he's a really good kid and has a lot of fun. His muscles just don't work like ours do," said Paul.
They decided to create an annual cattle sale to raise money and awareness about the disease. Since the first sale seven years ago, the Heaton family and their supporters have raised over $134,000 for CureDuchenne, a national nonprofit organization that funds medical research and supports early-stage biotech companies working toward treatments and a cure.
Related: Calves to Cure helps fund research for Worden boy's rare disease
This year, 26 cattle producers donated 125 head of cattle to the auction and could choose to donate either all or a portion of the sale to the cause. Attendees also contributed through cash donations and raffle tickets.
“We decided the thing that fit our family and our friends from around the state that wanted to help us when they found out about Grant's diagnosis was to hold a cattle sale,” said Paul.
CureDuchenne representative Jordan Lynch has traveled from California each year to support the Heatons' event.
"This is unique, and that's one reason why we love it, just because it's so specific to this community and Montana," said Lynch. "Whenever I come here, I feel like I'm a part of the family. I think that just might be the Montana way.”
Since its founding 20 years ago, the nonprofit has helped raise over $27 million, which has contributed to 19 clinical trials and one FDA-approved drug treatment. That investment has also attracted $3.5 billion in follow-up funding from venture capitalists and pharmaceutical companies. Lynch explained that it takes roughly a billion dollars to take a drug from the clinical phase to the market, so every effort counts towards advancement.
“There's been a lot of incredible progress that's been made through families like the Heatons, who have taken upon themselves to fundraise and support the work that we do, and we invest that in those different research projects," said Lynch.
Related: 'Our only chance is research': Calves To Cure raising money for currently incurable disease
Grant has participated in clinical trials himself, but none have been the right fit yet. Still, his parents remain hopeful as a solution remains in sight.
"There's some stuff that's come up, gene editing, gene therapy drug, that's been approved by the FDA. We decided that it's not quite the right fit for Grant," said Paul. "It's one of the things that we're watching, and there's a handful of other ones that are along that same vein that they show promise, but only time will tell, and time's kind of what we're fighting against too.”
“There hasn't been anything that's been the right fit for Grant, but doesn't mean we're not going to stop watching it," said Laura. "We're not going to stop."
Paul and Laura have made it a point to be honest with Grant about his diagnosis, and while it is a difficult conversation, Grant is aware of it.
"We've been up front with Grant about Duchenne from the beginning. We just try to keep it age-appropriate," said Paul. “A kid at any age shouldn't have to worry about that. I know he does, and it's hard on him at times, especially as his friends are getting older and doing more ... but he's handling it as well as we can hope.”
Grant hasn't let his disease stop him. Despite using a mobility scooter at school to help conserve his strength, he still enjoys participating in everyday activities with his friends.
“I use it every day at school, and if we go somewhere during the day, like shopping or something,” said Grant. “It hasn't really (bothered) me.”
The sale and work with the nonprofit have also connected the Heatons with other families navigating Duchenne. Attending conferences has offered them support, advice, and a sense of community.
"It's hard to find another family that's in the same boat," said Paul. "It's allowed us to put ourselves out there and connect with people and let them know that they're not alone."
“We know the support's there and we appreciate that. We just keep going to doctors' appointments and doing what we can," added Laura.
Though the path forward is uncertain, the Heaton family remains committed to doing all they can for as long as they can.
“Eventually, it's got a shelf life. A lot of it is going to depend on Grant," said Paul. "We'll do what we can for as long as we can, and raise money, and support our good cause as much as we can.”
“I’d just say thank you to everybody that showed up today," said Grant.
CureDuchenne believes meaningful breakthroughs are on the horizon, but even if a cure is not yet found, the sale is bringing more awareness to the disease each year. And just as powerful, it's given hope to the Heatons and so many other families walking the same road.
"I think in the next three years, we're going to see some really meaningful progress," said Lynch. "Like diabetes, where you have treatments that can manage that and you can live a normal life, we believe that in the next 10 years, we're going to have something like that for every boy.”
To learn more about Calves to Cure, click here.
