As a kid, Gabby Choi remembers spending hours in the bathroom with her mother, who also had HHT, as she dealt with her hemorrhagic nosebleeds that seemingly kept getting worse and worse.

It had a significant impact on her mom’s quality of life – with the frequent bleeds interfering with work or preventing her from wanting to socialize in fear of a bad bleed striking.

Sadly in 2017, Gabby’s mother Julia was diagnosed with pancreatic cancer. Because of her progressed HHT, she didn’t qualify for any of the clinical trials that could have given her a better chance at fighting the cancer.

Gabby’s own HHT symptoms remained relatively mild during her childhood. She’d go on to swim collegiately at Emory University and receive her MBA from Harvard Business School, but the experiences with her mother motivated her to get more involved with the HHT community and help in any way she could.

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.”