Rose Klassen could feel her heart breaking when her husband, Jeff Klassen, unfolded a letter more than a year ago that confirmed his diagnosis of an irreversible, rare neurodegenerative disease.
There was a 50% chance Jeff Klassen would get it from his dad, and the odds it seemed, were not in his favor.
Rose Klassen, of Boulder, knew the effects of Spinocerebellar ataxia type 3 also known as SCA3, which had begun to impair Jeff’s dad, Greg Klassen. She also knew there had to be a treatment or some kind of hope to help both her husband and father-in-law.
As an analyst, research and digging for data was her specialty, so Rose Klassen embarked on an online journey to find whatever she could to possibly help Jeff and Greg Klassen.
She stumbled across an online interview with a man named Rich Horgan, founder and president of the non-profit biotechnology company, Cure Rare Disease.
“I was like ‘Wow this guy is the real deal,’” Rose Klassen said. “I reached out to him, and he emailed me back, which I was totally not expecting.”
Since Rose Klassen’s initial back-and-forth email conversation with Horgan, they’ve met and have been working to find a treatment for Greg Klassen. Although, the family knows the symptoms like Greg Klassen’s inability to walk without support or difficulty pronouncing words may not be reversible, their hope is to prevent the disease from worsening.
“I don’t want to be closed to the idea that there’s going to be further things down the road that will help reverse this,” Rose Klassen said.
Greg Klassen said he was first diagnosed with SCA3 about 10 years ago. Since then, he has stopped mountain biking because his vision is impaired, he has started using a walker and struggles to pronounce words.
“I work very, very hard to pronounce my words but they are slow and don’t often come out,” he said.
Through Cure Rare Disease, which helps patients connect with scientists doing research on rare diseases, the Klassens have started working with a doctor in the Netherlands. They are only about two months into the process and have raised about $100,000 so far to pay for the treatment.
In another year, Rose Klassen said they will know if the treatment is effective and non-toxic, but the timeline of when the treatment will be given to Greg Klassen is unclear because it is still in experimental phases and approval from the U.S. Food and Drug Administration is still needed.
“Then there’s figuring out the clinician who is going to actually do it, and there’s just so many pieces to this that it’s hard to do project planning,” she said.
Horgan said he started the company in 2018 after his brother was diagnosed with Duchenne muscular dystrophy, severe and progressive muscle-wasting disease.
“Since its founding, Cure Rare Disease has become a major nonprofit, biotech effort, and has created a development pipeline to deliver personalized treatments,” he said. “To date, we have many families, like the Klassens, that are already in our pipeline.”
Since his diagnosis, Jeff Klassen said he is still asymptomatic but will eventually need a treatment as well and may follow the same route his dad is taking if there are no other treatments available.
“It’s not a competition,” he said. “We would love for pharmaceutical companies to beat us to a cure, but (Horgan) stepped in to fill the void, and we don’t have to wait on pharmaceutical companies to do something.”
Greg Klassen’s treatment is estimated to cost about $2 to $3 million, and it is not covered by insurance because no treatments for his disease currently exist.
“I’m gonna put my life’s finances behind this effort,” Greg Klassen said. “There’s nothing better than I can do with my funds than support this research.”
After Jeff Klassen’s diagnosis and while watching Greg Klassen’s symptoms worsen, it was easy to lose hope. Cure Rare Disease has renewed that hope, Rose Klassen said.
“It’s a new hope,” she said. “We can do this. There’s hope and just really believing that and pursuing that and being active — we’re not going to wait around for a cure. We’re doing everything we can to bring it around faster.”
The Klassen family is participating in a Strive For Five campaign to raise $5 million for Cure Rare Disease. Any funds collected by the program support all of the organization’s patients. Donations can be made at cureraredisease.org/five.