What the HHT?
A blog for the HHT community
Posts by Ashley Watkins
Send hearts & kisses this special Rare Disease Month!
February is Rare Disease Month and we want to show our stripes and appreciation on this very special LEAP year! Honor someone special to you who is affected by HHT by participating in our annual Kisses for a Cure tribute celebration from February 14 through February 29 This year, Rare Disease Day® will be celebrated on its official and rarely occurring date, February 29th, which occurs only once every four years!
Uplifting Athletes Support the Rare Disease Community
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.
Read MoreCelebrate Rare on Rare Disease Day (Feb 29th)
Rare Disease Day® is February 28th! This year, Rare Disease Month is particularly special as it marks the 40th anniversary of the Orphan Drug Act (ODA), a landmark law that has benefited millions of Americans living with rare disease, including the HHT community!
The law helps incentivize and catalyze rare disease research. With the help of ODA and years of Cure HHT’s own advocacy efforts, we now have three clinical trials underway in HHT!
Read MoreAn HHT patient conference can change your life
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.
Read MoreDr. Anthony Anzell Presented with $20,000 Research Grant
The University of Pittsburgh’s Dr. Anthony Anzell Presented with $20,000 Research Grant from Uplifting Athletes Dr. Anzell is among 10 rare disease researchers to be awarded a grant at Uplifting Athletes’ Young Investigator Draft on Feb. 3 at Lincoln Financial Field Pittsburgh (January 9, 2024) — Uplifting Athletes, a nonprofit organization dedicated to serving the…
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