A message from Cure HHT Executive Director, Marianne Clancy
It is with tearful joyfulness that I share this truly momentous news with you: Our HHT Center of Excellence (CoE) funding request made it into the final spending bill, and that bill was signed into law by President Biden just a few weeks ago. At long last, we are successful! The new “National HHT Diagnosis and Treatment Initiative” will provide $2 million in funds to our existing CoEs to help expand staffing and improve infrastructure, as well as provide aid in the establishment of new CoEs around the U.S. Up until now, our 23 CoEs around the country have had no access to federal funding despite HHT being the second most common genetic bleeding disorder in the United States. This is a true breakthrough for our community, and truly a moment to celebrate!
In many ways, it is surreal to have finally reached this point. Years and years of effort, time and investment have led to this finally becoming a reality. Our late Board of Directors president, Jane Ribicoff Silk and I began on this journey in 2005. With our legislative consultant Mark Vieth at our side, we made countless trips to Capitol Hill. There are so many people to thank who have played vital roles along this journey.
In particular, I must acknowledge Dr. Jeff Pollak and Kate Henderson at Yale University School of Medicine, Dr. Vivek Iyer at Mayo Clinic, Dr. Raj Kasthuri at University of North Carolina, Dr. Murali Chakinala and Dr. Andy White at Washington University, Dr. Kevin Whitehead and Jamie McDonald at University of Utah and Dr. Jim Gossage at Augusta University. The entire HHT community owes you a debt of gratitude for fighting on their behalf and meeting with key House and Senate members and staff to advocate for this funding. We have hope because leaders like you are on our side.
To all those center directors who wrote incredibly compelling letters along the way, we thank you! I must also thank Dr. Bob White (Yale), who worked with Mark and I for 15 years to make this happen. To our patients who sent letters and made phone calls and helped advocate, you’ve made a true difference.
This truly is a powerful community, and it took contributions from so many to finally get this done. Our thanks go out to all of those who came to Washington with us or met in regional offices with your local Representatives and Senators. So many of you shared your stories through personal letters with your leaders to emphasize why this cause truly deserves to be funded. You helped get this across the finish line.
To all our donors, from the bottom of my heart, thank you. Truly. Thank you. This is not possible without you and your generous support. We have been able to wage this fight and achieve success because of you. You are the lifeblood of this organization, and your contributions have created tremendous momentum in our quest to one day find a cure.
I must also thank the staff here at Cure HHT – often working behind the scenes, this team is a truly relentless force in supporting this community and driving our mission forward. It is a lean yet mighty team.
While much work remains to reach that ultimate goal, this is a major step along the way. This is a transformational time for the HHT community, with new breakthroughs seemingly just within reach. But now is not the time to let up. We must keep the momentum going. I am excited to continue reaching new heights together to better find, treat, and – one day – cure HHT.
With hope and excitement,
Marianne S. Clancy
Executive Director, Cure HHT