Cure HHT Grant is Catalyst for NIH Funding

Research LogosMore than $3 million has been awarded to two renowned Cure HHT scientists whose projects were originally funded by a Cure HHT seed grant.

The National Institutes of Health (NIH) found the research of Dr. Rosemary Akhurst and Dr. Paul Oh worthy of further investment. Together, they have been awarded $3.3 million! That means for every $1 Cure HHT invested in their research, the HHT community received an additional $33 in research funds. These results reaffirm the Cure HHT belief that funding pilot projects can lead to HHT breakthroughs for patients around the world.

The Grant Program

The intent of the Cure HHT research grant program is to invest early in well-defined research projects that may not otherwise receive funding. Our seed grant program fosters new areas of research and enhances research partnerships. The goal is to provide investigators with the cash needed to generate initial data that will be of interest to a larger organization; the end result being larger funding for a long-term HHT research project.

Dr. Rosemary AkhurstAkhurst, Rosemary

Dr. Rosemary Akhurst was awarded a $50,000 grant from Cure HHT in 2008 to begin determining which variant genes increase the risk of AVMs; if patients are at a higher risk of lung or brain AVMs based on genetics; and if doctors can personalize medicine for HHT patients. She has now leveraged that seed funding into a $1.8 million grant from the National Institutes of Health!

Q: How instrumental was the $50,000 Cure HHT grant?
A: The grant really acted as our seed money on the project to begin collecting preliminary data. Without that data there would have been no way to generate interest in the project or apply for federal funding. Without that initial grant, this project would not exist.

Q: How has Cure HHT continued to contribute to this important research?
A: Cure HHT is really what brought the team together for this project. I met both Chris Hughes and Marie Faughnan at the Family and Patient Conference in Los Angeles. We are each handling a specific aspect of this research within our expertise. The Foundation brought us together.

Q: Now that you have the funding, what are the next steps?
A: Over the last seven years we have written a few related publications and focused on research that lends itself to this study. But now that the funding has come in, we can begin to launch this project in full. We have already begun collecting blood samples and preparing mice for the study.

Oh PhD, Paul- researcher compressedDr. Paul Oh

What began as a $50,000 Cure HHT seed grant to kick-start Dr. Paul Oh’s investigation entitled, “The Role of Macrophages in the Pathogenesis of HHT” has been leveraged for an additional $1.5 million in funding from the National Institutes of Health!

“I thank you so much, the board of trustees and the donors for the trust and support during this drought season,” Oh said. “This NIH fund is enough to quench the thirst, but I will continue to seek additional funding for more vigorous research. I will do my best to find the mechanism-based therapy for HHT.”

Dr. Oh’s current research project hypothesizes that ALK1 or ENG-deficient endothelial cells promote the recruitment of macrophages, cells of the immune system formed in response to infection or damaged cells, and differentiation of them plays a crucial role in the development of AVMs.

The results from his study are anticipated to provide novel therapies with much lower potential side effects than current therapies. It will also allow the repurposing of drugs not previously considered to treat HHT patients.

Special thanks to The Olitsky Family Foundation and The Jeffrey A. Blevins Memorial Fund for contributing to the funding of this important research.

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Register Now

sheraton milwaukee brookfield hotelSaturday, September 19, 2015
Brookfield, Wisconsin

This one-day conference is sponsored by Cure HHT and hosted by the medical team at the Froedtert & Medical College of Wisconsin (MCW) HHT Treatment Center of Excellence. You will benefit from learning how HHT impacts each organ over time and the most current treatment options. This regional conference will highlight several new "hot topics" - IV Bevacizumab and Pediatric treatments - as well as a Patient Panel that will discuss "Living with HHT and Utilizing Your HHT Center". No matter where you live or how long you've known that you've had HHT, you should join us in Wisconsin.

Sheraton Milwaukee Brookfield Hotel
375 S. Moorland Road
Brookfield, WI  53005

Room Reservations:  If you would like to spend the night in Brookfield, WI, we have reserved a few discounted rooms ($99/night plus tax) Just call the hotel at 262-364-1100 and mention the Group Code "HHT Conference".

Conference Program:    VIEW Program Schedule

Learn from the Experts . . . We are thrilled to acknowledge our distinguished speakers from Froedtert & MCW:

Dr. Robert Krippendorf
Ms. Yi-Lee Ting, MS, CGC
Dr. William Rilling
Dr. Patricia Burrows
Dr. Patrick Foy
Dr. David Poetker

Not only will you receive the most current information on HHT research, diagnosis, management and treatment but you'll be able to talk one-on-one with leaders in the field of HHT, network with individuals and families affected by HHT and participate in small group discussions.

Registration: $125 per person includes all education materials and meals served during the conference. Registration does not include hotel reservations. There is a discounted fee for Froedtert & MCW staff; contact Zachary Timm (Froedtert & MCW) or Nicole Schaefer (Cure HHT) for the registration discount code.

Froedtert & MCW HHT Center:  Visit their website to learn more about the Froedtert & MCW HHT team, hospital, diagnostics, treatments, and much more.