What the HHT?
A blog for the HHT community
Help Keep Us On the Cutting Edge
The turn of the calendar to December marks the kickoff of our year-end appeal, and this year we are asking for your continued support to help keep us #OnTheCuttingEdge. The milestones we have our sights set on next are the kinds of things we could have only dreamed about just a few short years ago. A future exists where therapies – not surgeries – treat the chronic aspects of this disease. And that future is closer than you might realize!
Cure HHT remains a driving force for medical and scientific advancements in HHT, and throughout the month, we will be highlighting the transformational work being done…
Read MoreNew Therapeutic Development Arm Takes Shape
A Message From Marianne Clancy, Cure HHT Executive Director:
As you have read in the fall edition of our newsletter, our foundation has invested in the creation of a new “Therapeutic Development Arm” to help us more directly collaborate with the medical and scientific community to fast-track life-changing breakthroughs in HHT.
I am writing to you now to share the tremendously exciting news that Dr. Murali Chakinala will be joining Cure HHT in the role of Senior Clinical Research Advisor. In this role, Dr. Chakinala will be responsible for leading our strategy for engaging with industry to grow the clinical research and scientific opportunities for Cure HHT. He will also play a pivotal role in collaborating with our CHRN roadmap teams to prioritize and help operationalize the most impactful projects.
Read MoreOwning 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.
Read MoreDevelopment 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.
Read MoreSpreading 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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