What the HHT?

A blog for the HHT community

Owning Our Future: Introducing Our New Therapeutic Development Arm

Our mission has remained the same since our founding: to find a cure… to create a future without the unnecessary suffering, without the pain and loss. While work remains to make that future a reality, we’re excited to introduce a monumental step we’re taking to bring that future forward faster.

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Development of HHT Centers of Excellence

In this newsletter, we have announced the addition of The University of Florida to the North American Centers of Excellence (CoE) team.  This is great news for people with HHT living in Florida who have been looking forward to a place where they can be seen in their home state.  While people in and near Florida will directly benefit from this addition, all of us with HHT will benefit indirectly as well.  When a new center opens that means more physician experts are added to the HHT community.  This increases our knowledge about how HHT affects people, what types of treatments are beneficial and enlarges the pool of potential clinical research sites to help us develop new tests, procedures and medications which may improve the lives of all people with HHT.  It also boosts the number of medical personnel and trainees who learn about HHT that can later bring that knowledge with them when they see patients.

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Spreading Awareness 1 Mile at a Time

I’ve always been drawn to vanity plates. They really can stimulate your mind and keep you guessing. Some are more self-explanatory than others, and others can lead you on a search asking “what is that”??? Which is exactly what I hoped to accomplish with my “CURE HHT” Ohio license plate. I want people to ask…

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Every story is unique, every journey different, but we’re all in this together

We didn’t really know HHT was HHT until my mother was diagnosed in middle age by her symptoms alone.  Before that, we believed it was just nosebleeds that ran in our family, beginning with my grandmother.  We didn’t have much reason to believe otherwise. Grandma never had much trouble other than nosebleeds.  I never recall…

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A 1 in 5,000 Chance That Doesn’t Exactly Make You Feel Like a Winner

When you think of the lottery and hear the odds are 1 in 5000… and then your number is chosen? Instantly you feel like you are sitting on top of the world.  But what happens when the 1 in 5000 in your world becomes 4 out of 5 of your children being diagnosed with HHT? Upon the mention of that news, you don’t exactly feel like a winner. And although with most diseases they say early detection is best, this breaking news didn’t seem to put us at ease as we prepared for preventative measures and a boat load of testing.

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