Cure HHT’s 2020 Robert E. Berkman Leadership Award Recipient

Up Close and Personal with Christopher Hughes, PhD – Cure HHT’s 2020 Robert E. Berkman Leadership Award Recipient
by Phyllis Loveland

In recognition of Robert E. Berkman’s exemplary leadership, we honor his legacy through the creation of the Robert E. Berkman Leadership Award, to recognize those members of the Cure HHT Community who exhibit the qualities that have made Bob such a valued part of our organization’s mission.

Have you ever spoken to someone who is just so darn brilliant that you stand in awe, hanging on their every word? If you haven’t, then you need to meet Chris Hughes, PhD, Chair of the Cure HHT North American Scientific and Medical Advisory Council, Lead Researcher for the Rare as One, Chan Zuckerberg Initiative and this year’s recipient of the Robert E. Berkman Leadership Award (“REBLA”). Dr. Hughes is one of those people who is connected to HHT with a passion and drive that stands out among not only his peers but the entire HHT Community. “He was a unanimous and natural choice for this award,” states Bob Berkman, named Award Honoree.

I had the opportunity to chat personally with Dr. Hughes about new advancements in the HHT research world and, of course, the excitement of being the newest REBLA recipient. When he told me that it was “such an honor to be part of the same group of people that have received the award over the past 10 years,” I couldn’t help but be struck by the humility in his voice. “I know all the former winners personally, worked with them, and feel incredibly proud to be part of this impressive group,” says Dr. Hughes in his melodic and sincerest English accent.

Being relatively new to Cure HHT, I was curious to learn how he became involved with this little-known rare disease called HHT. He quickly dives into his history with the disease, starting with his application to Cure HHT for a small seed grant that a friend had brought to his attention. He further recounts that he went ahead and applied, and luckily was awarded the grant. Lucky for him maybe but even luckier for HHT patients around the world! Dr. Hughes’ funded research would study the mechanism of how AVMs form in HHT. Until 2008, Cure HHT did not have any vascular biologists its team. After Dr. Hughes’ research started involving the mechanism of AVMs, it became a top priority for Cure HHT.

His involvement with the organization continued to grow at an incredible rate. “You know, Marianne [Marianne Clancy, Cure HHT’s Executive Director and HHT patient] sucks you in with her passion and drive and it’s too hard to say no,” he says with a chuckle. But it was after his first Cure HHT Physician and Patient Conference when he was approached by a patient who offered their gratitude for working on “our disease,” that he was completely hooked. “It was a very moving moment for me to know how I was impacting patients directly,” expresses Dr. Hughes.

From there, his dedication to this disease knew no bounds. Dr. Hughes quickly became Chair of the Cure HHT Global Research and Scientific Board, Co-Chair of the HHT International Scientific Conference in 2015 and Chair of the Cure HHT Research Grant Committee. He took an interest in the up and coming researchers and became involved in the HHT Young Scholar program for which he was instrumental in furthering.

When Dr. Hughes is not at his lab at the University of California Irvine, where he is a Professor in the Molecular Biology and Biochemistry School of Biological Studies and Professor of Biomedical Engineering at The Henry Samueli School of Engineering (wow…that’s a mouth full!), he is often seen speaking at Cure HHT Patient and Physician Conferences, attending numerous research receptions, and accompanying Marianne to advocate on behalf of HHT research at the National Institutes of Health.  Most recently, Dr. Hughes was instrumental in assisting with the application for the impressive Chan Zuckerberg Research Grant Cure HHT received in February, and sits as the Cure HHT Lead Researcher on the Executive Committee and Research Network Team. “We are so grateful to Dr. Hughes for his collaborative work, leadership and friendship with Cure HHT,” says Marianne fondly, “he puts his heart in everything that he does.”

While all of these accomplishments are jaw-dropping and certainly make it obvious why Dr. Hughes was this year’s winner of the REBLA, it is his passion and expertise that is so striking when he starts talking about promising new HHT research in the works. I asked him what gets him excited in the HHT research world, and he eagerly explained the fascinating science and research behind the study of repurposing drugs. “It’s immensely expensive to develop new drugs and now we are making waves and gaining traction in getting trials done with repurposed drugs. Drug companies are interested and some of our recent studies were hugely influential with good results from these repurposed drugs,” he explains. He further states that there is a “really solid foundation of researchers doing basic research with a network of treating patients and getting Pharma interested in working with us. It’s a real transition point, and we are finally breaking through.” With all the rare diseases out there, Dr. Hughes knows that these types of successes in research are critical in moving forward in finding a cure.

We transition our conversation from all of the exciting research to talk about the Chan Zuckerberg Initiative “Rare as One.” He beams over what CZI means for Cure HHT and the community of HHT patients that the organization has grown over the past 26 years. “Building on the patient network that Cure HHT has already established will create the opportunity for a bigger and better Patient Research Network with the CZI Initiative.” He believes capitalizing on this network and solidifying the contact between doctors, researchers and patients will create outreach across the globe like never before. “We try to do this whenever we host our Scientific Conference…create outreach in underserved areas like we did in Croatia and Puerto Rico. But this goes way beyond even that, extending into areas where there are communities with zero understanding of this disease. It’s an amazing feeling to be part of this community and I’m very very proud.”

Robert E. Berkman Leadership Award Past Recipients

2012 – Marie Faughnan, MD

2014 – Michael Lewis

2016 – Dennis Sprecher, MD

2018 – James R. Gossage, MD

2020 – Christopher C. Hughes, PhD