What the HHT?
A blog for the HHT community
Front Page Announcements
Cure HHT Takes on Capitol Hill
This month, our group of Cure HHT staff, patient advocates, physicians and researchers descended upon Capitol Hill with the mission of shedding light on the importance of protecting and expanding federal funding for HHT. In all, we had 35 appointments with congressional and senatorial office members and staff – including a meeting with Senator Susan Collins. Our advocacy efforts wrapped up with a Congressional Briefing from inside the Capitol Building, where we presented on the impact federal funding can have in changing the trajectory of this disease.
Read More15th HHT International Scientific Conference
The 15th HHT International Scientific Conference will take place in Mandelieu-la-Napoule, France from October 15-19, 2024. Connect with researchers unraveling the mysteries of HHT mechanisms of disease and discovering potential therapies for patients around the world. Registration is now open! Learn more >>
Read MoreLeaving a Lasting Legacy Through Planned Giving
One of the most powerful ways to contribute to Cure HHT’s mission is through planned giving, such including Cure HHT in a will or living trust, establishing a life-income plan, or naming us as a beneficiary in an insurance policy. For those passionate about supporting causes close to their hearts, planned giving offers a powerful opportunity to make a lasting impact for generations to come.
Community members who have remembered Cure HHT in their estate plans join an honorary group we call “The Cornerstone Society,” a membership that signifies our warm appreciation of your lasting contribution.
Read MoreUplifting 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!
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