What the HHT?
A blog for the HHT community
Currently, one of the most prized possessions our kids have is the Queen Greatest Hits CD. When Eleanor was a baby, we played Bohemian Rhapsody by Queen or the Muppets version for her every time she needed an echo or to have a test done at the hospital. The love of Queen passed to Theo and the CD is queued up in the car ready to go. Right now, We Will Rock You is…Read More
This June Awareness Month, Cure HHT was able to spread awareness in a huge way with a 24-foot-wide billboard! Our “More Than Just a Nosebleed” billboard was perched on Route 50 in Maryland, the most traveled highway to all the Maryland beaches where approximately 30,000 cars passed this sign every single day. Can you imagine…Read More
My first time learning about HHT was in 2016 when I was diagnosed with the disease at the young age of 43. I had suffered a fall from my horse that landed me at the Wellington Orthopedics Ward in New Zealand. During my admission, I was seen by a specialist, who had attended a seminar on a rare disease called HHT–just two days prior. He noticed I had ‘red spots’ on…Read More
May 31, 2020 | The Peterbourough Examiner | By Omar Mosleh: “Most kids in the hospital spend their time thinking about going home, but Eleni Zoe Pournaras spent her time in the Hospital for Sick Children putting the finishing touches on a book she co-authored and illustrated…”Read More
Just a few years ago, I was a 48-year-old sales manager and an owner of a large, successful manufacturing company. I was always in great shape, and when my partners and I decided to obtain disability insurance, I was rated the #1 best for my health at the time. But 3 weeks later, a “time…Read More