What the HHT?
A blog for the HHT community
Posts by Riley Blevins
Cure HHT Canada now registered as a charitable organization in Canada
We are excited to announce the establishment of Cure HHT Canada as a registered, tax-deductible charitable organization in Canada! We heard your feedback on how important this designation is to you and we’ve worked diligently over the last two years to reach this milestone. The establishment of Cure HHT Canada marks a concentrated effort to expand and increase our support of our community in Canada!
Read MoreE-News: Insider Connection
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Read MoreAnn Trussell: “My promise to my daughters…I will do everything in my power to find a cure!”
Ann Trussell joined the Cure HHT Board of Directors to help ensure the next generation of HHT patients don’t experience the pain and struggles of generations past.
“My promise to my daughters is that as long as I’m able, I will do everything in my power to find a cure,” Ann says. “Children are being born with HHT every day. We owe it to them to do better!”
For Ann and her family, as is all too common with HHT, so many signs and symptoms were overlooked for years. A diagnosis didn’t come until her youngest daughter, Lauren, was born.
Lauren suffered a stroke in utero, and doctors were never able to pinpoint why. As she got older, Lauren began passing out and turning blue. Again, no one seemed to know why. One day when Lauren was 9 years old, it happened and “she wasn’t coming back to us,” Ann remembers. Lauren was taken to Children’s Hospital of Philadelphia’s cardiac care floor where a chest CT would reveal a massive AVM in Lauren’s right lung. Dr. Scott Trerotola, Director of the HHT Center of Excellence at UPenn, was called to review the scans.
Read MoreGabby Choi: There is so much power in patients advocating for themselves…
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.
Read MoreYear 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.
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