What the HHT?
A blog for the HHT community
Front Page Announcements
Year End Appeal – Curing for Generations
Curing for Generations is more than a campaign slogan, it is our commitment to the thousands of families affected by HHT and a promise to never give up!
For many, HHT has taken far too much – families whose photo albums include faces of loved ones lost, whose lives were cut short because of this disease – as well as pictures of those who don’t yet know the journey that lies ahead. But in those albums, there is also hope — like the sweet face of baby Rachel Erickson, whose life was saved by the quick intervention of Cure HHT and the skilled expertise of an HHT physician.
Read MoreThey told John he only had a month left to live…he knew he had to keep fighting
John Bannon was told he had about a month left to live. For over a decade, John searched for relief to try to manage his increasingly severe nosebleeds. Bleeds so bad that he became known as “the nosebleed guy” to the local ambulance team – and so severe he was reliant on 2 to 4 units of blood every other week. In a matter of months, John went from 220 pounds down to 165. His organs were beginning to fail.
John had tried everything, it felt like. He had multiple cauterizations at Yale and UPenn, made a trip to San Diego to try Avastin, had his nose embolized at Columbia; none of it was effective in getting the bleeds under control. “It felt like there was no hope, but I wasn’t going to give up,” John said. “I knew I had to keep fighting. Between my wife and I, we have 11 children and 17 grandchildren. Five of my kids have HHT, and some of my grandkids do as well. I was determined to find something before I left this planet that would help them not struggle like I had.”
Read More2024 National HHT Patient & Physician Conference
Join us for the first National Patient & Physician Conference on the east coast in some time – patients and healthcare professionals alike won’t want to miss this opportunity!
We will we bring together the experts from 3 of our top centers – University of Pennsylvania/Children’s Hospital of Philadelphia, Johns Hopkins University and New York Presbyterian/Columbia University. Registration opens soon! Learn more >>
Read MoreWebinar – Pazopanib: A Groundbreaking Trial for HHT (Recording)
Get your questions answered about our newest clinical trial! Join Cassi Friday, PhD and Jim Gossage, MD as they explain who is eligible, what Pazopanib is and how you can get involved!
Read MoreSuffer from brain AVMs? You can help further HHT research today
Cure HHT, along with HHT Centers of Excellence across North America, are now actively recruiting HHT patients worldwide to participate in the NIH funded study, entitled “Cerebral Hemorrhage Risk in Hereditary Hemorrhagic Telangiectasia (HHT)”. The goal of this research is to determine what genetic and clinical factors signal high risk for hemorrhage from brain AVMs.…
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