DURHAM – Back in 2003, new mother Debra Miller with her husband, Paul, founded CureDuchenne after their only son was diagnosed with Duchenne, a rapidly progressing form of muscular dystrophy.
No doubt, it’s been a long haul working to find the best therapies for the disease.
But there is now reason to be even more hopeful.
Just last month, the nonprofit headquartered in California announced a three-year partnership with Durham-based Baebies. A growth-stage company, Baebies is delivering innovative products and services for newborn screening and pediatric testing.
It’s the latest example of how nonprofit foundations are increasingly making investments in life science companies to hasten their missions.
“One of the reasons we started working with biotech companies early on was because we funded academic institutions, and I was really surprised with the long, lengthy process of getting a contract done compared to a month of so with a biotech company,” Miller told a crowd gathered for LaunchBio’s Invest in Cures forum on Thursday night.
She appeared alongside Baebies CEO Richard West on a panel at the North Carolina Biotechnology Center, discussing their investment philosophies and deal structures.
“When we met Beabies and Rich, it was kind of that same breath of fresh air. ‘Oh, there’s a quicker, better way to possibly get this done’. It was an immediate yes, let’s do this now,” she recalled. “We’re really aligned with accelerating things as fast as possible.”
Innovative screening option
As part of the deal, Baebies will add Duchenne muscular dystrophy, the most common and lethal form of muscular dystrophy that primarily affects young boys, to its expanded newborn screening service.
It’s estimated that one in 5000 male newborns are born with the disease.
Newborn screening allows for early diagnosis, which is beneficial for patients and their families.
“My first reaction to newborn screening before we had anything to do with it was not positive because I really enjoyed the time that I had with my son before we knew he had this disease,” admitted Miller.
“But everything has changed now. We not only have treatments that are approved, a lot more knowledge about care considerations and what to do with kids younger versus later, but also so many hopeful impactful therapies that are in clinical trials right now that can make an impact.”
It’s the first of a series of strategic investments planned by CureDuchenne. To date, the organization has leveraged more than $1.3 billion in follow-on investment from venture capital, biotech and pharmaceutical companies to fund research and other initiatives.
“It is partnerships with organizations like CureDuchenne that will help us make the greatest possible impact. With a shared mission, this partnership will enable us to find these babies when they’re born and get them started on the treatment they need as soon as possible,” added West, who co-founded Baebies four years ago.
Previously, West and Vamsee Pamula led Advanced Liquid Logic, a Duke spinout that developed lab-on-a-chip technology and products for the research tools and diagnostic markets. Prior to that, he was founder and CEO of TriVirix, a venture-funded medical equipment contract manufacturer.
Baebies’ products include SEEKER, a FDA cleared and CE marked newborn screening platform for lysosomal storage disorders, and FINDERTM, a near patient pediatric testing platform that is still under development and not available at this time for sale or use in any territory.
Already, the company has raised $26 million in equity and built a team of 82 employees.
“My partner and I wanted to do something where we would both be doing well and doing good at the same time,” said West. ““It’s mission: We save babies. We look forward to solving a lot of problems. There’s plenty of more work to do.”