$200,000 Awarded in HHT Research Grants
Cure HHT is the cornerstone of the HHT community. With this honor comes the responsibility to advance the goal we all share: to give those affected by HHT a chance for a normal life.
On behalf of patients and families, our efforts center on improving medical care and treatments today and helping to advance the science needed to cure HHT disease. New research is one of the most crucial aspects of our mission to find a cure for HHT. In October 2014, Cure HHT launched the HHT Young Research Scholar Award Program, designed to attract new researchers into the field of Hereditary Hemorrhagic Telangiectasia (HHT). The Cure HHT Board of Directors authorized funding for five $30,000 awards for young researchers holding a Ph.D. (no more than 5 years beyond completion of their post-doctoral training) with the proposed project supervised by a mentor working in an active and productive research program.
Cure HHT is excited to announce that we received a record number of applications, 25 in total, for the HHT Young Research Scholar Award Program. Outstanding research proposals were submitted from universities and hospitals around the world including institutions in Belgium, Canada, France, Netherlands, Spain, United Kingdom and United States. A scientific review committee comprised of 20 international basic science and clinical science experts provided comprehensive summaries of each application to determine which projects aligned with the Cure HHT mission to understand the mechanism of this disease and advance therapeutic options for the HHT population.
The 2015 HHT Young Research Scholar Awardees:
- Chadwick Davis, PhD - Recursion Pharmaceuticals
- Hongyu Tian, PhD - Duke University
- Simon Tual-Chalot, PhD - Newcastle University
- Whitney Wooderchak-Donahue, PhD - University of Utah / ARUP Laboratories
- Wan Zhu, PhD - University of California, San Francisco
READ a summary of each HHT Young Research Scholar Project which will provide the HHT community a better understanding of the basic mechanisms of arteriovenous malformation (AVM) formation; target downstream signaling of ALK1 and Endoglin; describe how genetic modifiers influence HHT phenotype variations; determine the correlation between Endoglin and high output heart failure; test innovative and noninvasive alternative treatments for Brain AVMs; and identify potential drug therapies to fully or partially reverse HHT. Overall, the research proposed in 2015 cover a wide range of basic and clinical science topics. We are very excited to partner with these young researchers and anxiously await the results of their study.
2015 Research Grant Awarded to Dr. Paul Oh
Cure HHT is pleased to announce that Suk Paul Oh, PhD from the University of Florida has been awarded a $50,000 grant for his research entitled "The Role of Macrophages in the Pathogenesis of HHT".
Dr. Oh's hypothesis is that ALK1 or ENG-deficient endothelial cells promote recruitment of monocytes/macrophages and differentiation of them to play a crucial role in the development of AVMs. His laboratory will focus on testing this hypothesis with genetic, pharmacological, and cellular approaches. The results of Dr. Oh's study will allow HHT communities to repurpose drugs currently on the market to treat HHT patients.
READ more about Dr. Oh's research research project.
Funding HHT Research - YOU can make a difference!
We galvanize and connect efforts toward change across the HHT community. Cure HHT, along with patients, scientists, and doctors, works to improve the lives of those affected by HHT today through funding, conducting and participating in HHT research. Thus we create lasting collaborations that will ultimately transform treatments of HHT disease.
You will notice that 5 HHT Young Research Scholar Awards were granted, however, there are several more research applications worthy of funding. If you are able to help us fund another grant, please contact Nicole Schaefer, Director of Professional & Medical Programs at [email protected].
In addition, Dr. Oh's one year grant is funded by Cure HHT and the Jeffrey A. Blevins Memorial Fund. The Blevins family set up this special fund, in memory of their son, brother, husband and father who lost his battle with HHT on May 9, 2007, with a desire to alter this disease in Jeffrey's honor for HHT families around the world.
Though it grows every day, the HHT community is still small, and it is through mutual support that we will continue to expand and thrive. We invite you to stand with us and help change the future of this disease.
*On Donation Form, please choose "Research" as your answer to "How did you learn about Cure HHT?"
2015: Year of Transformation
Cure HHT is the only organization in the world with the perseverance and the experience to integrate and drive vital progress across patient, medical and scientific communities. Despite our small staff and modest budget, we have demonstrated a remarkable track record of success in all three of these arenas.
Cure HHT is at the epicenter of the national and global effort to advocate for patients and families, raise awareness of HHT, catalyze and sponsor critical research, create lasting collaborations, and advance treatments.
As we approach our 25th anniversary, Cure HHT is poised to seize opportunities that can change the course of this disease in our lifetime. Our goal is to increase awareness of HHT among the public and medical community, which will lead to earlier diagnosis of those with the disease; to ensure wider availability and consistency of quality care; and to fund research that will enable scientific breakthroughs, increase our understanding of the disease, improve existing therapies, deliver new therapies, and ultimately lead to a cure.
Cure HHT Research Activities
- Focus Groups - Cure HHT has partnered with a pharmaceutical company that believes their drug will impact bleeding in HHT patients. A third party is conducting focus group interviews in Southfield, MI, Raleigh, NC, and Boston, MA in early 2015 to learn more about nosebleeds related to HHT and fatigue.
- Brain AVM Study - Cure HHT is now a recruiting center for qualified patients who are not affiliated with a participating HHT Center of Excellence. We will begin to actively recruit patients once we receive our IRB (Internal Review Board) approval. If you have a clinical or genetic diagnosis of HHT, are at least 3 years of age, and have a brain AVM (whether its' been treated or not) then you should contact [email protected] to let us know that you are interested in learning more about participating in this study.
- Young Scholar Awards - Cure HHT will be awarding five (5) $30,000 research grants to Ph.D.'s who are not more than 5 years beyond completion of their post-doctoral training. This is a new program designed to attract young researchers into the field of HHT. Applications are due by January 15, 2015 and winners will be notified on March 16, 2015.
- HHT Scientific Conference - Cure HHT will host the 11th International HHT Scientific Conference in Captiva, FL on June 11-14, 2015. This is the first time that this international event will be held in North America. We anticipate over 200 scientists and clinicians from throughout the world who specialize in HHT to attend this event. Abstract submissions are due by February 10, 2015 and early bird registration expires on April 1, 2015.
- Peer Reviewed Medical Research Program (PRMRP) - Cure HHT was successful in obtaining vascular malformations into the Defense Appropriations bill which includes HHT as a type of vascular malformation. This means that the HHT research community will now be able to compete for research grants from the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP). We anticipate that the PRMRP will issue a program announcement on the availability of funding and grant guidelines sometime in February or March 2015. The total amount of funding is approximately $240MM and 23 diseases, including HHT, are part of this program.
- Outcomes Registry for HHT - Cure HHT awarded a research grant to Dartmouth's Geisel School of Medicine to develop, in collaboration with Cure HHT's Scientific Research Director, this critical tool for gathering natural history, treatment outcomes and quality of life issues from HHT patients. The Outcomes Registry for HHT will undergo Beta Testing in early 2015.
- Scientific/Medical Publications - Since 2004, over 500 HHT related articles have been published by members of the Cure HHT Global Research and Medical Advisory Board (GRMAB). A complete publication listing is located in the Resource section of the Cure HHT website along with a list of pertinent articles by organ/HHT impact topics.
Cure HHT Increase Access to Quality Care Activities
- Establish new Centers of Excellence in underserved areas
- Expand the number of community physicians participating in the online HHT Physician Directory to connect patients and physicians throughout North America
- Advance HHT Care Guidelines to reflect new information from latest clinical and translational research to ensure best practices and quality care standards
Cure HHT Awareness Activities
- Create innovative programs and tool kits for specialists who encounter HHT
- Provide resources to HHT Physicians to educate medical students, interns and residents
- Collaborate with professional medical and scientific organizations to sponsor HHT speakers
- Educate and empower patients, family members and friends to become HHT advocates through webinars and resource materials
2014: Year of Action in Review
2014 was the “Year of Action” for HHT disease. The HHT Foundation International took bold steps to reposition itself, starting with a comprehensive rebranding. Renamed CURE HHT in 2014, we became a new organization that re-activated our mission and enhanced our efforts to advance therapies NOW, increasing access to expert care and dramatically increasing awareness. Here’s a glimpse at what we accomplished this past year.
- New HHT Centers of Excellence at University of California at San Francisco
- Launched Physician Directory on Cure HHT website for patients to find the closest HHT Center and /or a doctor knowledgeable about HHT in their community
- Launched a live webinar series with recordings posted on Cure HHT website for all to hear at their convenience
- Completed North American Study of Epistaxis, known as the NOSE Study, with results to be published in 2015
- Developed relationships with Bio/Pharma Companies that will accelerate drug discovery efforts for HHT; research projects will be underway in 2015
- Cure HHT was successful in obtaining vascular malformations into the Defense Appropriations bill which includes HHT as a type of vascular malformation. This means that the HHT research community will now be able to compete for research grants from the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP).
- Outcomes Registry for HHT is in its final stage of development; beta testing will occur in early 2015
Cure HHT Legislative Breakthrough
I would like to update everyone on some exciting news on thelegislative and research front!
Two years ago, the HHT Foundation focused its' advocacy efforts in specific targeted programs to benefit HHT research. We were successful in obtaining vascular malformations into the Defense Appropriations bill which includes HHT as a type of vascular malformation. With the U.S. Senate approval of the Omnibus Appropriations Act on December 13, 2014 and the President’s signature on the bill December 16, 2014, the HHT research community will now be able to compete for research grants from the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP).
The bill includes “vascular malformations” among the list of eligible conditions that can be studied under the PRMRP. We anticipate that the PRMRP will issue a program announcement on the availability of funding and grant guidelines sometime in February or March 2015. The total amount of funding is approximately $240MM and 23 diseases, including HHT, are part of this program. It is important to note that non-U.S. researchers can be the lead on proposals. Examples can be found http://cdmrp.army.mil/search.aspx
Cure HHT will notify the scientific community as soon as the program announcement is issued. We anticipate that there will be strong collaborations among our global HHT research community.
We have worked hard through the years to get into this program. Now, the Cure HHT legislative activities are directed to strengthen our presence across several National Institutes of Health (NIH) Institutes and are in the process of putting those plans into place.
To learn more, VISIT the Peer Reviewed Medical Research Program website or READ their FY12 publication.
MARIANNE S. CLANCY, RDH, MPA
Don't miss out on making a difference - CALL CURE HHT at 410-357-9932 to provide your credit card over the phone!
#GIVINGTUESDAY is another opportunity to support Cure HHT and the crucial work of our organization. This year alone we have:
# Supported over 1,000 families, totaling approximately 350 hours, who needed assistance with their diagnosis
# Launched our webinar series that has touched over 4,000 people
# Funded $90,000 to support HHT research projects
These are only three areas Cure HHT has supported YOU and the HHT community every day. Visit our website to learn more about how your dollars make a difference.
We know you are receiving a number of requests during this giving season. We appreciate your gift at any level, and we are thrilled to share with you that through December 31, 2014 your donation will be tripled by a generous Foundation supporter. Make your donation today.
Imagine the difference your dollar could make.
New information on HHT and Pregnancy
We invite you to read this newly published study out of Toronto on HHT and pregnancy conducted by Dr. Els de Gussem, an HHT Foundation Robert I White Investigator Awardee and recipient of the Foundation's Young Clinician's Award. This study was a collaboration with Dr. Faughnan and team in Toronto and the Netherlands HHT Center (Dr. Johannes Mager).
Read the summary or the full article here.
The HHT Foundation funds promising doctors, clinicians and scientists in researching causes, the efficacy of treatments and the genetics surrounding HHT. Find more information about the HHT Foundation research grants here.
A Special Thanks
There is no doubt that the 17th National Family and Patient Conference in Santa Clara, California stood out from previous conferences.
Former HHT Board President Bob Berkman wrote, “I’ve been coming to these conferences, this is my fourth, and this is really like, a transformed environment from eight years ago when I started with the organization. So, I’m really excited about what’s happening, the changes that are taking place, and the promises we have for the future of HHT patients. These conferences all kind of build on each other, but sometimes there’s a line in the sand, and you step over and you are in a whole new place. And, this is what this year’s conference seems to be.”
Cure HHT is grateful for the individuals, organizations, and corporations who contributed to the success of our 17th National HHT Patient and Family Conference! These partnerships are essential to the strength of the HHT community. We also want to acknowledge those individuals who stood out this past year for their leadership, volunteerism, advocacy and financial support of Cure HHT.
Michael Lewis received the Robert E. Berkman Leadership Award for his outstanding leadership of the new Physician’s Directory, the rebranding of our organization, as well as his commitment with the Campaign to lead others to invest in our strategic goals involving Research, Access to Care and Awareness.
Angela Carlisle-Brown was Awarded the Trish Linke Award for her tireless work with our Foundation related to furthering the mission through her work in grassroots fundraising, increasing HHT awareness, reaching out to new families, work with the Youth program and assisting us on numerous occasions this year with donated professional services.
Jim and Michelle Lapides received the Compassionate Champion Award which recognizes individuals who have demonstrated compassion through significant actions in advocacy, fundraising, and awareness to propel our organization forward. Their expertise in strategic leadership and significant personal commitment is very inspiring.
David and Laura Rinn became Founders in providing a very generous financial contribution of $100,000. This contribution provides important funding propelling our research, access to care and awareness campaign forward.
June is HHT Awareness Month
The HHT Community is the Catalyst for Finding a Cure for HHT Disease.
The National Institute of Health (NIH) currently spends half-a-million dollars on research for HHT disease. The NIH spends $75 million EACH on diseases with similar incidents. The lack of HHT awareness even among the medical community means that it can take on average 30 years to receive a correct diagnosis. Who has 30 years to wait?
When you’re suffering from regular nosebleeds and are at risk for blood clots, no one should have to live in fear, especially for 30 years. Together our actions help raise awareness about HHT and raise funds to reduce the diagnosis time so that no one has to live with fear and worry. Our goal is to improve the lives for those suffering from this genetic disease, one that impacts an entire family for generations. Which is very important to spread the word and raise awareness about HHT disease. 30 years is too long to wait.
In honor of HHT Awareness Month, the Foundation is counting down the month of June to reveal some exciting changes. There are endless ways that you can take action and spread the word to raise awareness during June. Visit CureHHT.org, for ideas, events and more!
A few ways to get started:
HHT Conference Registration NOW OPEN
We are pleased to invite you to join us this July 18th-20th for the 17th National Patient and Family Conference in sunny Santa Clara, CA.
Online Registration is Now Open!
Register by June 23, 2014 and take advantage of early bird prices and save $$! Save even more by booking your hotel room by July 2, 2014.
To register online click here.
There is Something for Everyone!
Enjoy meeting with many leaders in the HHT field, developing a network of individuals and other families affected by HHT and to enjoy education in a fun and social environment. View the Conference Brochure.
Adult Program Highlights Include:
- NEW THIS YEAR! CME Credits for Medical Professionals
- Two New Adult Program Tracks:
- Family Planning and Pediatrics
- Advanced Stages of HHT
- Two Days of Q&A Sessions with HHT Experts on Insurance, Brain AVMs, Family Planning, Outcomes and Treatments and Much More!
Three Expert Symposiums on HHT:
- Nosebleed Management
- New! Insurance
- New! HHT Research Around the World in 60 Minutes
Youth Interactive Program
Children have the opportunity to interact in an age-appropriate forum and discussions with HHT specialists, create crucial bonds with other children affected by HHT and perhaps the most vital lesson they will learn is that they are not alone!
Youth Program Highlights Include:
- Let’s Talk About HHT
- Life After High School (ages 14-16)
- Sharing Your Story (ages 6-13)
- Saturday Afternoon Field Trip to Tech Museum!
- and Much More!
VISIT our website to read more about this year's national patient and family conference.
March Webinar Recording Available
Join Dr. Sara Palmer as she examines the effects of HHT on emotions, family, and social life. She offers strategies for managing the everyday stress of living with HHT, recognizing when professional treatment is needed and strengthening family supports. Special tips for family caregivers and parents of children with HHT are included.