Owning Our Future: Introducing Our New Therapeutic Development Arm

Our mission has remained the same since our founding: to find a cure… to create a future without the unnecessary suffering, without the pain and loss. While work remains to make that future a reality, we’re excited to introduce a monumental step we’re taking to bring that future forward faster.

To help us more directly create transformative medical impact, we’ve built a new Therapeutic Development Arm of our foundation. This will allow us to be more proactive in accelerating knowledge, developing therapies, and moving faster to find a cure. With scientific advancements moving faster than ever before, this team will give us the in-house expertise to harness scientific opportunities and turn them into impact for HHT patients everywhere.

Responsibilities for this team include managing our CoE strategy, owning patient registries, establishing strategic partnerships with pharmaceutical companies, overseeing our portfolio of research, and fostering greater collaboration amongst our scientific community.

Several factors are converging to make this the opportune time for such a move: Internally, we have made significant progress in expanding the number of physicians and researchers focusing on HHT. Externally, scientific breakthroughs are materializing faster than before.  Our organization needs the expertise to harness the power of the community we’ve built and the science that’s possible today to launch effective therapies faster. We cannot sit on the sidelines and hope researchers are investing in our disease. We must make it happen — and ensure our patient voices are at the center of it all.

While we’re placing enhanced focus on driving science forward, supporting our community and increasing awareness and education remains a critical part of our mission. We’re pleased to announce Nicole Schafer has been elevated to Chief Operating Officer and will now oversee our educational programs, community engagement, donor development, and more.

This step would not be possible without the support of the Chan Zuckerberg Initiative “Rare as One” grant. In 2019, we were one of 30 rare disease foundations selected. The foundation has equipped us with the confidence to grow our patient-centered research infrastructure in a way that will create true impact.

We are setting our sights higher than ever before because we believe real hope is within reach.

Research, Scientific and Medical Team Structure:

• Senior Director of Research & Strategic Medical Partnerships (Marianne Clancy)
• Director, National CoE Coordinating Center (Melissa Dickey, RN, MSN, FNP)
• Director, Cure HHT Research Network Programs and Grant Management (Cassi Friday, MS, PhD)
• Global CoE Strategy Director (Scott Olitsky, MD, MBA)
• Project Manager, Pazopanib Clinical Trial (Gary Saum)
• Patient Registry and Education Program Manager (Courtney Kasturiarachi, MPH)
• National CoE Coordinating Center and CME Administrator (Nolie Krock, MPH)
• Brain Vascular Malformation Consortium (BVMC) Clinical Research Coordinator (Leslie Perry, MSN, RN)