Cure HHT Funding Portfolio

Cure HHT has a long history of leveraging* donor gifts into breakthrough research. Through the investment of $50,000 seed research grants totaling $1.4 Million since 2004, we are now able to determine the classes of drug therapies that are best targeted to reverse AVM development and prevent AVMs from forming in the future. For the first time in 25 years, the building blocks we have carefully invested in learning how AVMs form and the specific mechanisms related to development of HHT at a cellular and molecular level are falling into place for Advancing A Cure!

Together with you, Cure HHT is committed to radically changing the treatment of HHT and improving the lives of HHT patients and their families around the world.

 

*Cure HHT has leveraged their $1.4 Million investment in seed research grants to over $24 Million in research funding through the National Institutes of Health (NIH), Department of Defense (DOD), FDA Orphan Drug, and European Research Agency. That is a 1,700% return on investment (ROI)!

Cure HHT's research program fosters the development of lasting cures for the underlying mechanisms and causes of HHT. To spur development of new ideas leading to novel drug therapies, Cure HHT funds basic science research grants to help learn more about the mechanisms of pathology in HHT. Cure HHT Basic Science Research Grants.

ResearcherInstitution / CountryGrant TypeHHT FundingOther Funding
Christopher Hughes, PhDUniversity of California, Irvine (USA)Basic Science (2017)---$1,923,000 (NCATS)
Stryder Meadows, PhDTulane University (USA)Basic Science (2016)---$1,785,199 (DOD)
Marie Faughnan, MD; Douglas Marchuk, PhD; Philippe Marambaud, PhD; S. Paul Oh, PhD; Beth Roman, PhDUniversity of Toronto (Canada); Duke University (USA); Feinstein Institute for Medical Research (USA); Barrow Neurological Institute (USA); University of Pittsburgh (USA)Basic Science and Clinical Science (2016)---$10,000,000 (DOD)
Michaela Aldred, PhDLerner Research Institute, Cleveland Clinic (USA)Discovery Award (2015)---$2,600,000 (DOD)
Rong Wang, PhDUniversity of California, San Francisco (USA)Investigator Initiative Award (2015)---$1,500,000 (DOD)
S. Paul Oh, PhDUniversity of Florida (USA)Basic Science (2015)$50,000$1,500,000 (NIH / NHLBI)
Beth Roman, PhDUniversity of Pittsburgh (USA)Genetics (2011)$45,000$2,000,000 (NIH)
Rosemary Akhurst, PhDUniversity of California, San Francisco (USA)Basic Science (2008)$50,000$1,800,000 (NIH / NHLBI)
Christopher Hughes, PhDUniversity of California, Irvine (USA)Basic Science (2008)$50,000---
S. Paul Oh, PhDUniversity of Florida (USA)Basic Science (2008)$50,000$1,000,000 (NIH)
Michelle Letarte, PhDThe Hospital for Sick Children (Canada)Basic Science (2006)$50,000---
Douglas Marchuk, PhDDuke University (USA)Basic Science (2004)$50,000---
Mary Porteous, MDThe University of Edinburgh (Scotland)Genetics (2004)$5,000---

Cure HHT has been instrumental in significant advances in HHT treatment, and will continue to act as a catalyst for improved care for HHT patients. Clinical science research determines the safety and effectiveness of medications, devices, diagnostic products and treatments intended for human use. To facilitate the translation of basic science research into clinical trials and new treatments for HHT, Cure HHT collaborates with industry and academia to test the efficacy of therapeutic drugs, medical devices, and treatment protocols. Cure HHT Clinical Science Research Grants.

ResearcherInstitution / CountryGrant TypeHHT FundingOther Funding
Marie Faughnan, MD; Douglas Marchuk, PhD; Philippe Marambaud, PhD; S. Paul Oh, PhD; Beth Roman, PhDUniversity of Toronto (Canada); Duke University (USA); Feinstein Institute for Medical Research (USA); Barrow Neurological Institute (USA); University of Pittsburgh (USA)Basic Science and Clinical Science (2016)---$10,000,000 (DOD)
Amelia Clark, MDStanford University (USA)Clinical Science (2014)$10,000---
Kristen Anton, MSBioInformatics Service Center, Dartmouth College (USA)Therapeutic Outcomes (2013)$165,000---
Jonathan Zaroff, MDKaiser Foundation (USA)Prevalance / Undiagnosed (2013)$30,000---
Jeffrey Hoag, MDDrexel University (USA)Treatment of Disease (2007)$50,000---
Christine Mummery, PhDLeiden University Medical Center (Netherlands)Treatment of Disease (2006)$50,000---
Carmelo Bernabeu, PhDCentro de Investigaciones Biologica (Spain)Treatment of Disease (2005)$50,000$500,000 (European Research Agency)
Karen Swanson, DOMayo Clinic (USA)Treatment of Disease (2004)$50,000$1,000,000 (FDA Orphan Drug Grant)
Stanley Shapshay, MDAlbany Medical Center (USA)Treatment of Disease (2004)$5,000---
Jamie McDonald, MS, CGCARUP Laboratories (US)Genetics / DNA Patent Release (2003)$10,000---
Arupa Ganguly, PhDUniversity of Pennsylvania Genetic Diagnostic Laboratory (USA)Genetics / DNA Patent Release (2003)$10,000---
Kirk Vandezande HHT Solutions, Inc. (Canada)Genetics / DNA Patent Release (2003)$10,000---

The HHT community is in desperate need of effective and safe treatments to improve health and quality of life. Clinical trials test the safety and efficacy of potential drug therapies and treatments as well as new applications for FDA approved drugs and/or treatments.

ResearcherClinical Trial DescriptionStudy YearHHT Funding
North American Study of Epistaxis (NOSE)Multi-center clinical trial designed to test the efficacy of three nasal spray agents as compared to a placebo in reducing nose bleed frequency, duration and increasing quality of life.2010 - 2014$180,000
Pazopanib Clinical Trial for HHTMulti-center clinical trial to demonstrate the safety and effectiveness of Pazopanib, possibly the first "HHT Pill", as an effective treatment for chronic bleeding and anemia.TBD - critical funding needed$350,000

The Cure HHT Young Scholar Research Program supports scientists* and clinicians* who show exceptional ability and promise for conducting HHT basic science, clinical science or translational science research. The objective of this program is to foster creative HHT research; enhance early career development of outstanding young investigators; and increase opportunities for the young investigator to recognize our mission to FIND, TREAT and CURE HHT. CureHHT Young Investigator Awards.

*Residents, Postdoctoral/Clinical Fellows, PhD Candidates or Early Stage Investigator who are within 3 years of completing their terminal research degree or within 3 years of completing their medical residency/sub-specialty fellowship

ResearcherInstitution / CountryGrant TypeHHT Funding
HHT International Scientific ConferenceSponsor - Young Investigator Travel Awards and Presentation Awards2017$14,750
Veronique Vorselaars, PhDSt. Antonius Hospital (Netherlands)2017$1,200
HHT International Scientific ConferenceSponsor - Young Investigator Presentation Awards2003 - 2015$14,000
Hongyu Tian, PhDDuke University (USA)Basic Science (2015)$30,000
Wan Zhu, PhDUniversity of California, San Francisco (USA)Basic Science (2015)$30,000
Simon Tual-Chalot, PhDNewcastle University (UK)Basic Science (2015)$30,000
Whitney Wooderchak-Donahue, PhDUniversity of Utah / ARUP Laboratories (USA)Genetics (2015)$30,000
Chadwick Davis, PhDRecursion Pharmaceuticals (USA)Drug Therapy (2015)$30,000
Pinar Bayrak-Toydemir, MD, PhDUniversity of Utah / ARUP Laboratories (USA)Genetics (2008)$20,000
Sebastian Velthius, MD, PhDSt. Antonius Hospital (Netherlands)2014$2,000
Sabine Bailly, MDCEA-Grenoble (France)NIH Travel Award (2006)$1,000
Terri DiMaio, PhDUniversity of Wisconsin (USA)NIH Travel Award (2006)$1,000
Africa Fernandez, PhDCentro de Investigaciones Biologicas (Spain)NIH Travel Award (2006)$1,000
Eric Finkelstein, PhDSyracuse University (USA)NIH Travel Award (2006)$1,000
Tassilo Forg, PhDUniversity of Applied Sciences (Germany)NIH Travel Award (2006)$1,000
Arupa Ganguly, PhDUniversity of Pennsylvania (USA)NIH Travel Award (2006)$1,000
Fatima Govani, PhD University of Oxford (UK)NIH Travel Award (2006)$1,000
Jose Miguel Lopez-Novoa, PhD Universidad de Salamanca (Spain)NIH Travel Award (2006)$1,000
Mourad Toporsian, PhDMcGill University (Canada)NIH Travel Award (2006)$1,000
Liana ZuccoUniversity College London (UK)NIH Travel Award (2006)$1,000

This award was established in recognition of Dr. Robert I. White Jr.’s outstanding contribution to HHT care and to mentoring other clinicians to develop expertise in HHT care and research. This award is given annually to a clinician (physician or health professional), who is within the first years of work involving HHT and who embodies Dr. White’s qualities as a compassionate and dedicated clinician, devoted to improving HHT care.

ResearcherInstitution / CountryAward YearHHT Funding
Steven Hetts, MDUniversity of California, San Francisco (USA)2016$2,500
Marcelo Serra, MDHospital Italiano de Buenos Aires (Argentina)2015$2,500
Justin McWilliams, MDUniversity of California, Los Angeles (USA)2011$2,500
Takeo Nishida, PhDYale University (USA)2010$2,500
Els Marie De Gussem, MDGrace Hospital (Canada)2009$2,500
Sophie Dupuis-Girod, MDCHU de Lyon (France)2008$2,500
Roberto Zarrabeitia, MDHospital Sierrallana (Spain)2007$2,500
Pinar Bayrak-Toydemir, MD, PhDUniversity of Utah / ARUP Laboratories (USA)2006$2,500
Gaetan Lesca, MDCHU de Lyon (France)2005$2,500
Tom Letteboer, MD, PhDUniversity Medical Centre Utrecht (Netherlands)2004$2,500

Cure HHT has long acted as a catalyst by making personal connections within the relevant communities and hosting scientific and medical conferences. To date, Cure HHT has partnered with NAVBO, NIH, CDC, American Academy of Otolaryngology and many other organizations to educate physicians and scientists about HHT.

ResearcherInstitution / CountryAward YearHHT Funding
HHT International Scientific ConferenceConference Host2017$61,500
North American Vascular Biology Organization (NAVBO)Sponsor - HHT Symposia2016$5,000
HHT International Scientific ConferenceConference Host2015$33,000
HHT International Scientific ConferenceSponsor - Speaker Travel Awards2001 - 2013$70,500
North American Vascular Biology Organization (NAVBO)Sponsor - HHT Symposia2014$10,000
North American Vascular Biology Organization (NAVBO)Sponsor - HHT Genetics Research Presentation2009$10,000
National Institutes of Health (NIH)Sponsor - Brain AVM Presentation2008$2,000
North American Vascular Biology Organization (NAVBO)Sponsor - HHT Symposia2007$2,000
HHT Clinical Guidelines ConferenceSponsor - Expert Travel Awards2006$60,000
National Institutes of HealthSponsor - Physician Training2006$5,000