There Has Never Been More Reason For Hope: Consider Accelerating Progress With A Gift This December

A letter from Cure HHT Executive Director Marianne Clancy. Support Cure HHT’s mission with a gift this December. 

 

“It’s just a nosebleed.”

It’s a misconception I still hear far too often. And I realize those receiving this letter need no explanation that HHT is so much more. As patients, caregivers, and friends of those impacted by this disease, we’ve experienced too much loss, too much hardship and too many trials at the hands of HHT.

But what many are less aware of is the lengths with which our organization is involved with changing the future of this disease. At Cure HHT, we are more than just a patient support organization. We are the catalyst that drives science and treatment forward.

We are not sitting on the sideline hoping researchers and pharmaceutical companies will focus on our disease. We are making it happen. A few years ago, we made the decision to invest in building out a Therapeutic Development Arm of our organization – tasked with proactively working with the medical and science communities to accelerate the pace of progress. It’s paying dividends, as I can truly say there’s never been a more hopeful time for patients.

• With our partnership in advocating for funding, Diagonal Therapeutics has launched with $128M in Series A funding and focusing solely on a curative HHT Therapy.
• Two HHT clinical trials have had positive results – the PATH Trial has become the first large-scale, randomized study for HHT and Vaderis Therapeutics recently announced the first positive industry-led HHT Trial.

• We launched the first ever HHT Biorepository, whereby researchers around the world can access real HHT tissue that is critically needed to drive science forward.
• We have issued a grant to the Broad Institute of Harvard and MIT to a team exploring a precision therapy that has the potential to reverse disease.

There has never been more reason for hope.

This December, we are calling upon this mighty community to support our work to change how this disease is treated. A generous group of donors will be matching gifts made through the end of the year, doubling the impact of your support.

I thank you for considering accelerating the pace of progress with a gift today.

With deep gratitude and warm regards,

Marianne S. Clancy, MPA

Executive Director, Cure HHT