ORLANDO, Florida—Parents have long used car washes and bake sales, walkathons and marathons, and GoFundMe pages to raise money for research to cure diseases that affect their children.
Paul and Laura Heaton decided to try something different: livestock auctions. As longtime cattle ranchers in Worden, Montana (population 506), they established a Facebook group, Calves to Cure DMD, in 2019 to help their son, Grant, who has Duchenne muscular dystrophy (DMD).
The innovative idea fits in well with the culture of Montana, a large yet sparsely populated state with only a handful of Duchenne cases and little awareness of the rare neuromuscular disease.
“When Grant was diagnosed 5 years ago with Duchenne, we went through what everybody goes through, trying to figure it out,” said his father, who owns a company that builds barbed-wire fencing. “Pretty quickly, we came to the same conclusion that everybody does: our only chance is to find a cure, or even a treatment. And that has to be done by raising money.”
Grant and his parents, along with his older sister, Elyse, attended CureDuchenne’s 2022 Futures conference, held in Orlando, Florida. At that event, Paul Heaton explained his unusual strategy for generating research funds for DMD.
“Our idea was to hold an annual cattle sale in Billings [Montana’s largest city], where people could bring in an animal and donate a portion of their check to us. Then we send the money to CureDuchenne for research,” he told Rare Disease Advisor. “The bonus is that we’re getting a little more awareness out there about Duchenne.”
Calves to Cure DMD holds its livestock auction every September, always on a Thursday. A 2000-pound bull can fetch 80 cents a pound, or $1600.
“Calves come to market in the fall. This gives us a chance to include calves, yearlings, and bulls—anybody can bring anything. It’s not just calves that we sell,” Heaton said, adding that people also bring animals that are no longer financially productive. “If they want to donate only a portion of their check, we’ll take it. It doesn’t matter.”
‘Every Little Bit Helps’
The Heatons publicized their first auction in September 2019 by printing brochures, calling influential friends, and securing media coverage by a Billings radio station as well as the local Yellowstone County News and Western Ag Reporter, a livestock industry newspaper.
“Montana’s biggest industry is agriculture. We know a lot of people in our state who are tied in with agriculture and cattle. Everybody wants to help,” he said. “So we use this as our vehicle for anybody around the entire state to pitch in and do what they can.”
That first year, after securing permission from the Billings Livestock Commission, about 30 head of cattle—half of them steers, half heifers—were auctioned off, generating $17,000 for DMD research.
Then the COVID-19 pandemic hit, but didn’t stop the family’s momentum.
“We just plowed right through everything. We had our sale right in the middle of it both years [2020 and 2021] and just kept going,” Heaton said, noting that Calves to Cure DMD has already raised over $60,000 toward Duchenne research.
While that may not seem like much, every little bit helps, said Debra Miller, CureDuchenne’s cofounder and CEO.
“We have been funding research for the past 19 years, including 44 projects, 15 of which progressed to clinical trials— dystrophin restoration, antifibrotic agents, new anti-inflammatory agents, and other therapies,” Miller said, adding that outside of the federal government, CureDuchenne is the largest single funder of Duchenne research.
“Other nonprofits come in after that, as well as other pharma companies, but we really need to stay focused on early science. We need to be the one to take the risk,” she said.
Annual Auction to Continue
Grant has a duplication of exons 3 to 6, a relatively rare mutation even among Duchenne patients, since duplications cause only 10% of all DMD cases.
The boy’s treatment currently consists of deflazacort (Emflaza®), a corticosteroid sold by PTC Therapeutics. Insurance covers the cost of that drug—which costs $35,000 to $100,000 a year depending on the patient’s weight—but for the first 6 months, the Heatons were denied coverage and had to appeal; they eventually won.
“Just as Emflaza was approved by the FDA, the insurance company was fighting us on it. I think we fought them to a standstill,” he said. “We still have to fight every now and then.”
In addition to deflazacort, Grant takes vitamins and gets stretched every day. Horseback riding is also part of his therapy, and once a year, the boy sees specialists at the Shriners Hospital for Children in Spokane, Washington—an 8-hour drive each way.
Intellectually, Grant appears to be doing just fine for his age and is looking forward to the next Calves to Cure DMD auction scheduled for September 15, 2022.
“He’s just finished first grade and heading on to second grade. He’s smarter than I am,” Heaton said. “It’s hard to keep up with him. He’s reading really well and has a lot of fun at school.”
Yet physically, Grant is starting to show more pronounced symptoms of Duchenne.
“He’s still ambulatory, but he’s slowed down a little bit,” Heaton said. “We’re using a power scooter a little more all the time, especially during school. Like everybody with Duchenne, you try to take it easy and save as much muscle as you can at all times.”