What the HHT?

What does the NFL Draft, WWE star Joe Spivak (aka Tank Ledger), and HHT research have in common? Before Feb 2024, nothing! Allow me to explain this improbable connection and introduce you to another rare disease advocacy organization called Uplifting Athletes.  

Cure HHT’s draft pick was Dr. Anthony Anzell. The Uplifting Athletes scientific advisory board carefully reviewed applications and grant proposals from all researchers and we were very pleased when Dr. Anzell was selected to represent HHT and receive funding to support his work. Dr. Anzell is an HHT patient himself and after receiving his doctorate, he began studying HHT as a postdoctoral scholar.  Anthony was diagnosed at age 15 after multiple trips to the emergency room with horrible migraines. It took a courageous and bold mother to advocate for her son and finally he received scans that showed his brain was covered in abscess, his liver was also infected, and he had many pulmonary AVMs. After three brain surgeries, a liver surgery, and embolization of all the vessel malformations in his lungs, Anthony squeaked out alive. I wouldn’t say he was unphased because he healed and began doing crazy endurance events like ultra marathons, ironman races, and incredibly long swims all in the name of HHT awareness. Now, in addition to running for awareness, he is chasing a cure for HHT through research.  

A Letter from Cure HHT Board Member, Jim Lapides

 I am writing to share an invaluable opportunity for all HHT patients – Cure HHT is hosting its national patient conference. I say “invaluable opportunity” because going to my first patient conference in 2012 saved my life.

I was in crisis; laser treatments no longer worked for me, and I could not control my bleeds. My wife and I went to the conference armed with notebooks and learned as much as we could at the sessions. We talked with as many doctors, fellow patients, Cure HHT staff, board members and center directors as we could to learn about potential solutions today and in the future. I went home with a short- and long-term game plan – deciding on the best treatments and the right team to guide me. It led to a new procedure that worked for me and then a second treatment that worked even better. And it led me to finding an HHT Center of Excellence “home base” as well as expert clinicians at other HHT Centers and beyond that have helped me avoid problems and treat new ones.