What the HHT?
A blog for the HHT community
I had the opportunity to visit our pediatric team at the Children’s Hospital of Philadelphia (CHOP) while in town for a conference. The team was awarded an internal grant of $200,000, and we wanted to highlight the work they propose to do with this project.
Dr. Lauren Beslow (Neurology) kindly volunteered to give me a tour of CHOP. This children’s hospital is one of the most beautiful I’ve seen and is completely designed with kids in mind. Carefully chosen artwork that is cheerfully representative of children with all kinds of abilities, lit-up sculptures of brains, sensory mats on the floor, tabletops with pieces that spin, bookshelves with free books to take home, and colors everywhere truly make CHOP seem like a giant play area where you happen to see a healthcare provider.Read More
One year ago today, I underwent a liver transplant due to a genetic condition called HHT (Hereditary Hemorrhagic Telangiectasia), or Osler-Weber Rendu Syndrome. Roughly 1 in 5,000 people are diagnosed with HHT. Of that 1 in 5,000, up to 75%, have liver involvement. Of that 75%, only 8% become symptomatic. The data gets spotty after this, and from my research, I can only find 59 documented cases since 1985 of liver transplantation related to HHT.Read More
Cure HHT is thrilled to welcome Cassi Friday, PhD as the newest member of our team! Get to know Cassi, her connection to HHT, and learn more about her role as Director of Cure HHT Research Programs & Grants.Read More
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 More
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 More