More Hope Than Ever Before: Dr. Luke Evnin

Luke Evnin, PhD
Chairman, Board of Directors

Scleroderma Research Foundation






"Today we’re running the most powerful scleroderma research program in the country."
- Dr. Luke Evnin

When it comes to leading the campaign to find new therapies and treatments for a mysterious and often fatal disease, few people are more qualified and dedicated than Luke Evnin.

An accomplished scientist who has used his research background to fund and build biotech and pharmaceutical companies, the venture capitalist has spent the last 15 years chairing the Board of the Scleroderma Research Foundation. He has witnessed not only the growth of the organization in terms of funding, but great strides in the treatment of the disease.

Today Evnin says he has more hope and optimism than at any point since he found and joined the organization. And no one understands the research process and progress quite like Evnin, who tracks the studies with vital interest – he has been living with scleroderma for more than 20 years.

“Today we’re running the most powerful scleroderma research program in the country, and we’re very proud of that," he said. “But we’re not on some ivory tower, academic mission to figure out what’s going on with scleroderma. We are trying to get to the cure today and, in the meantime, we are trying to help patients who are struggling with the disease."


Evnin’s predecessor and SRF founder Sharon Monsky lost that struggle in 2002, 15 years after she came up with the prescient idea that the best way to cure scleroderma was to create a collaborative research model and motivate some of the best scientific and medical minds in the country to focus attention and research on the disease. And if that vision began when most physicians hadn’t even heard of the disease – or could even diagnose it – it’s no longer just a word in a medical dictionary, thanks largely to the work of the SRF and its scientific partners.


According to Evnin, giant strides are being made in the search to solve the mysteries behind the disease, which affects approximately 85,000 Americans. (In the U.S. a rare disease is defined as a disorder or illness with a prevalence of fewer than 200,000 affected people.) “But unlike a decade ago, there’s a tremendous amount of interest in rare diseases,” Evnin said. “In particular, smaller biotech companies are targeting rare diseases because the current legal and corporate research landscape gives small companies a viable path to profitability. This creates a fertile environment for developing potential drug therapies. The broader pharmaceutical community has come to understand that scleroderma is a significant unmet and serious healthcare challenge. And it is really refreshing and rewarding to be able to partner with companies that bring new energy and focus to the effort.’’




Even more encouraging is that the research efforts funded by the Scleroderma Research Foundation are paying off. Blade Therapeutics, a start-up company founded on research funded by the SRF, has raised more than $50 million to support discovery against a novel target. This depth of funding means patients will now have the opportunity to see this drug –designed to treat fibrosis- in a clinical trial in 2018.


That’s a giant leap from the early days of the Foundation, when Monsky was just trying to get the scientific and medical community’s attention focused on this little-known autoimmune disease. As a scleroderma patient, Evnin also understands the need to balance the research part of the Foundation’s work with the needs held by those personally grappling with the disease. He said that even with the mission of funding essential research, the foundation believes its responsibility is also to be a resource center for scleroderma patients.


“I’m on the phone with a patient every second week or so,’’ Evnin said. “It’s very personal because I’m living with the disease every day and taking medication every day, so I’m never very far from the disease. I just try to lay out the best options for them and help them find the right doctor who understands scleroderma.’’




In order to improve the standard of care for patients and provide clinicians and researchers with the data they need to accelerate the development of novel therapies, the SRF will soon launch the “CONQUER Registry.’’ In this effort, a consortium of leading scleroderma centers will collect longitudinal data on thousands of patients and assemble a vast database that can be queried to advance patient care and scleroderma research. The concept is to use big data to identify ideal points of intervention, and accelerate and improve outcomes. It will be the first and only national patient registry to track the disease.


The progress of the SRF’s work may also invite other changes, including more partnerships and an expanded board. But what will be key, as the work and network grows, is to never lose sight of the “family feel’’ of the SRF and its leadership – which has remained intact for decades – and has kept the board focused on what Evnin calls its “incredibly committed core.’’ As the SRF enters its fourth decade, the opportunity is ripe for an expanded community of individuals and organizations who understand and share the passion, compassion and scientific focus that are part of the SRF’s DNA.


“I look at our portfolio, the brain power focused on this disease, and the sophistication of the research, and it would be hard to imagine 10 years from now that all these ideas didn’t turn out to have a positive impact on patients’ lives,’’ he said. “It’s just hard to say which ideas will be ‘the ones’ that provides the ultimate breakthrough. But as we pass this 30-year marker, the guideposts are very promising.”


Thirty years after SRF’s founding, hope has evolved into optimism, and big ideas will soon become candidate drugs for clinical trials. Evnin said the progress confirms that the vision for a scientific, research-based foundation was the right one – past, present and future.


View the SRF's 2017 30th Anniversary Annual Report

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