Cure HHT has a long history of leveraging* donor gifts into breakthrough research. Through the investment of $50,000 seed research grants, young investigator grants and scientific conferences totaling $2.1 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 30 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 $2.1 Million investment to over $51.3 Million in research funding through the National Institutes of Health (NIH), Department of Defense (DOD), Food & Drug Administration (FDA) Orphan Drug, and European Research Agency. That is a 2,397% 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.
| Researcher | Institution / Country | Grant Type | HHT Funding | Other Funding |
|---|---|---|---|---|
| ResearcherBeth Roman, PhD | Institution / CountryUniversity of Pittsburgh (USA) | Grant TypeBasic Science (2021) | HHT Funding--- | Other Funding$2,000,000 (DOD) |
| ResearcherJennifer Fang, PhD | Institution / CountryUniversity of California, Irvine (USA) | Grant TypeBasic Science (2020) | HHT Funding--- | Other Funding$314,000 (DOD) |
| ResearcherStryder Meadows, PhD | Institution / CountryTulane University (USA) | Grant TypeBasic Science (2018) | HHT Funding--- | Other Funding$1,819,500 (NIH) |
| ResearcherChristopher Hughes, PhD | Institution / CountryUniversity of California, Irvine (USA) | Grant TypeBasic Science (2017) | HHT Funding--- | Other Funding$1,923,000 (NCATS) |
| ResearcherStryder Meadows, PhD | Institution / CountryTulane University (USA) | Grant TypeBasic Science (2016) | HHT Funding--- | Other Funding$1,785,199 (DOD) |
| ResearcherMarie Faughnan, MD; Douglas Marchuk, PhD; Philippe Marambaud, PhD; S. Paul Oh, PhD; Beth Roman, PhD | Institution / CountryUniversity of Toronto (Canada); Duke University (USA); Feinstein Institute for Medical Research (USA); Barrow Neurological Institute (USA); University of Pittsburgh (USA) | Grant TypeBasic Science and Clinical Science (2016) | HHT Funding--- | Other Funding$10,000,000 (DOD) |
| ResearcherMichaela Aldred, PhD | Institution / CountryLerner Research Institute, Cleveland Clinic (USA) | Grant TypeDiscovery Award (2015) | HHT Funding--- | Other Funding$2,600,000 (DOD) |
| ResearcherRong Wang, PhD | Institution / CountryUniversity of California, San Francisco (USA) | Grant TypeInvestigator Initiative Award (2015) | HHT Funding--- | Other Funding$1,500,000 (DOD) |
| ResearcherS. Paul Oh, PhD | Institution / CountryUniversity of Florida (USA) | Grant TypeBasic Science (2015) | HHT Funding$50,000 | Other Funding$1,500,000 (NIH / NHLBI) |
| ResearcherBeth Roman, PhD | Institution / CountryUniversity of Pittsburgh (USA) | Grant TypeGenetics (2011) | HHT Funding$45,000 | Other Funding$2,000,000 (NIH) |
| ResearcherRosemary Akhurst, PhD | Institution / CountryUniversity of California, San Francisco (USA) | Grant TypeBasic Science (2008) | HHT Funding$50,000 | Other Funding$1,800,000 (NIH / NHLBI) |
| ResearcherChristopher Hughes, PhD | Institution / CountryUniversity of California, Irvine (USA) | Grant TypeBasic Science (2008) | HHT Funding$50,000 | Other Funding--- |
| ResearcherS. Paul Oh, PhD | Institution / CountryUniversity of Florida (USA) | Grant TypeBasic Science (2008) | HHT Funding$50,000 | Other Funding$1,000,000 (NIH) |
| ResearcherMichelle Letarte, PhD | Institution / CountryThe Hospital for Sick Children (Canada) | Grant TypeBasic Science (2006) | HHT Funding$50,000 | Other Funding--- |
| ResearcherDouglas Marchuk, PhD | Institution / CountryDuke University (USA) | Grant TypeBasic Science (2004) | HHT Funding$50,000 | Other Funding--- |
| ResearcherMary Porteous, MD | Institution / CountryThe University of Edinburgh (Scotland) | Grant TypeGenetics (2004) | HHT Funding$5,000 | Other Funding--- |
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.
| Researcher | Institution / Country | Grant Type | HHT Funding | Other Funding |
|---|---|---|---|---|
| ResearcherClifford Weiss, MD | Institution / CountryJohns Hopkins University (USA) | Grant TypeClinical Science (2022) | HHT Funding$49,926 | Other Funding--- |
| ResearcherSteven Hetts, MD | Institution / CountryUniversity of California, San Francisco (USA) | Grant TypeClinical Science (2022) | HHT Funding--- | Other Funding$2,584,000 (DOD) |
| ResearcherHanny Al-Samkari, MD | Institution / CountryMassachusetts General Hospital (USA) | Grant TypeClinical Science (2020) | HHT Funding$40,000 | Other Funding$1,000,000 (NIH) |
| ResearcherEdda Spiekerkoetter, MD | Institution / CountryStanford University (USA) | Grant TypeClinical Science (2019) | HHT Funding--- | Other Funding$1,800,000 (DOD) |
| ResearcherMarie Faughnan, MD; Douglas Marchuk, PhD; Philippe Marambaud, PhD; S. Paul Oh, PhD; Beth Roman, PhD | Institution / CountryUniversity of Toronto (Canada); Duke University (USA); Feinstein Institute for Medical Research (USA); Barrow Neurological Institute (USA); University of Pittsburgh (USA) | Grant TypeBasic Science and Clinical Science (2016) | HHT Funding--- | Other Funding$10,000,000 (DOD) |
| ResearcherAmelia Clark, MD | Institution / CountryStanford University (USA) | Grant TypeClinical Science (2014) | HHT Funding$10,000 | Other Funding--- |
| ResearcherKristen Anton, MS | Institution / CountryBioInformatics Service Center, Dartmouth College (USA) | Grant TypeTherapeutic Outcomes (2013) | HHT Funding$165,000 | Other Funding--- |
| ResearcherJonathan Zaroff, MD | Institution / CountryKaiser Foundation (USA) | Grant TypePrevalance / Undiagnosed (2013) | HHT Funding$30,000 | Other Funding--- |
| ResearcherJeffrey Hoag, MD | Institution / CountryDrexel University (USA) | Grant TypeTreatment of Disease (2007) | HHT Funding$50,000 | Other Funding--- |
| ResearcherChristine Mummery, PhD | Institution / CountryLeiden University Medical Center (Netherlands) | Grant TypeTreatment of Disease (2006) | HHT Funding$50,000 | Other Funding--- |
| ResearcherCarmelo Bernabeu, PhD | Institution / CountryCentro de Investigaciones Biologica (Spain) | Grant TypeTreatment of Disease (2005) | HHT Funding$50,000 | Other Funding$500,000 (European Research Agency) |
| ResearcherKaren Swanson, DO | Institution / CountryMayo Clinic (USA) | Grant TypeTreatment of Disease (2004) | HHT Funding$50,000 | Other Funding$1,000,000 (FDA Orphan Drug Grant) |
| ResearcherStanley Shapshay, MD | Institution / CountryAlbany Medical Center (USA) | Grant TypeTreatment of Disease (2004) | HHT Funding$5,000 | Other Funding--- |
| ResearcherJamie McDonald, MS, CGC | Institution / CountryARUP Laboratories (USA) | Grant TypeGenetics / DNA Patent Release (2003) | HHT Funding$10,000 | Other Funding--- |
| ResearcherArupa Ganguly, PhD | Institution / CountryUniversity of Pennsylvania Genetic Diagnostic Laboratory (USA) | Grant TypeGenetics / DNA Patent Release (2003) | HHT Funding$10,000 | Other Funding--- |
| ResearcherKirk Vandezande | Institution / CountryHHT Solutions, Inc. (Canada) | Grant TypeGenetics / DNA Patent Release (2003) | HHT Funding$10,000 | Other Funding--- |
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.
| Researcher | Clinical Trial Description | Study Year | HHT Funding | Other Funding |
|---|---|---|---|---|
| ResearcherRandomized Trial for Pazopanib in HHT-Related Bleeding | Clinical Trial DescriptionA Phase II/III randomized, placebo-controlled, double-blind study to evaluate the effects of up to 24 weeks of low dose oral pazopanib on hereditary hemorrhagic telangiectasia (HHT) related epistaxis and anemia. | Study Year2022-2025 | HHT Funding | Other Funding$877,824 (FDA) |
| ResearcherRandomized Trial for Pazopanib in HHT-Related Bleeding | Clinical Trial DescriptionA Phase II/III randomized, placebo-controlled, double-blind study to evaluate the effects of up to 24 weeks of low dose oral pazopanib on hereditary hemorrhagic telangiectasia (HHT) related epistaxis and anemia. | Study Year2021-2024 | HHT Funding$350,000 | Other Funding$5,240,964 (DOD) |
| ResearcherPomalidomide for the Treatment of Bleeding in Hereditary Hemorrhagic Telangiectasia | Clinical Trial DescriptionA Phase II randomized, placebo-controlled double-blind study of pomalidomide in patients with hereditary hemorrhagic telangiectasia (HHT) with moderate to severe epistaxis who have anemia and/or require parenteral iron infusions or blood transfusions. Treatment with oral pomalidomide or matching placebo for 24 weeks. | Study Year2019-2023 | HHT Funding--- | Other Funding$3,638,312 (NIH) |
| ResearcherNorth American Study of Epistaxis (NOSE) | Clinical Trial DescriptionMulti-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. | Study Year2010 - 2014 | HHT Funding$180,000 | Other Funding--- |
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. Cure HHT 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
| Researcher | Institution / Country | Grant Type | HHT Funding |
|---|---|---|---|
| ResearcherHHT International Scientific Conference | Institution / CountryYoung Investigator Travel Awards and Presentation Awards | Grant Type2022 | HHT Funding$42,000 |
| ResearcherHHT International Scientific Conference | Institution / CountryYoung Investigator Travel Awards and Presentation Awards | Grant Type2019 | HHT Funding$20,250 |
| ResearcherHHT International Scientific Conference | Institution / CountryYoung Investigator Travel Awards and Presentation Awards | Grant Type2017 | HHT Funding$15,500 |
| ResearcherVeronique Vorselaars, PhD | Institution / CountrySt. Antonius Hospital (Netherlands) | Grant Type2017 | HHT Funding$1,200 |
| ResearcherHHT International Scientific Conference | Institution / CountryYoung Investigator Presentation Awards | Grant Type2003 - 2015 | HHT Funding$14,000 |
| ResearcherHongyu Tian, PhD | Institution / CountryDuke University (USA) | Grant TypeBasic Science (2015) | HHT Funding$30,000 |
| ResearcherWan Zhu, PhD | Institution / CountryUniversity of California, San Francisco (USA) | Grant TypeBasic Science (2015) | HHT Funding$30,000 |
| ResearcherSimon Tual-Chalot, PhD | Institution / CountryNewcastle University (UK) | Grant TypeBasic Science (2015) | HHT Funding$30,000 |
| ResearcherWhitney Wooderchak-Donahue, PhD | Institution / CountryUniversity of Utah / ARUP Laboratories (USA) | Grant TypeGenetics (2015) | HHT Funding$30,000 |
| ResearcherChadwick Davis, PhD | Institution / CountryRecursion Pharmaceuticals (USA) | Grant TypeDrug Therapy (2015) | HHT Funding$30,000 |
| ResearcherPinar Bayrak-Toydemir, MD, PhD | Institution / CountryUniversity of Utah / ARUP Laboratories (USA) | Grant TypeGenetics (2008) | HHT Funding$20,000 |
| ResearcherSebastian Velthius, MD, PhD | Institution / CountrySt. Antonius Hospital (Netherlands) | Grant Type2014 | HHT Funding$2,000 |
| ResearcherSabine Bailly, MD | Institution / CountryCEA-Grenoble (France) | Grant TypeNIH Travel Award (2006) | HHT Funding$1,000 |
| ResearcherTerri DiMaio, PhD | Institution / CountryUniversity of Wisconsin (USA) | Grant TypeNIH Travel Award (2006) | HHT Funding$1,000 |
| ResearcherAfrica Fernandez, PhD | Institution / CountryCentro de Investigaciones Biologicas (Spain) | Grant TypeNIH Travel Award (2006) | HHT Funding$1,000 |
| ResearcherEric Finkelstein, PhD | Institution / CountrySyracuse University (USA) | Grant TypeNIH Travel Award (2006) | HHT Funding$1,000 |
| ResearcherTassilo Forg, PhD | Institution / CountryUniversity of Applied Sciences (Germany) | Grant TypeNIH Travel Award (2006) | HHT Funding$1,000 |
| ResearcherArupa Ganguly, PhD | Institution / CountryUniversity of Pennsylvania (USA) | Grant TypeNIH Travel Award (2006) | HHT Funding$1,000 |
| ResearcherFatima Govani, PhD | Institution / CountryUniversity of Oxford (UK) | Grant TypeNIH Travel Award (2006) | HHT Funding$1,000 |
| ResearcherJose Miguel Lopez-Novoa, PhD | Institution / CountryUniversidad de Salamanca (Spain) | Grant TypeNIH Travel Award (2006) | HHT Funding$1,000 |
| ResearcherMourad Toporsian, PhD | Institution / CountryMcGill University (Canada) | Grant TypeNIH Travel Award (2006) | HHT Funding$1,000 |
| ResearcherLiana Zucco | Institution / CountryUniversity College London (UK) | Grant TypeNIH Travel Award (2006) | HHT Funding$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.
| Researcher | Institution / Country | Award Year | HHT Funding |
|---|---|---|---|
| ResearcherVivek Iyer, MD, MPH | Institution / CountryMayo Clinic (USA) | Award Year2019 | HHT Funding$2,500 |
| ResearcherSteven Hetts, MD | Institution / CountryUniversity of California, San Francisco (USA) | Award Year2017 | HHT Funding$2,500 |
| ResearcherMarcelo Serra, MD | Institution / CountryHospital Italiano de Buenos Aires (Argentina) | Award Year2015 | HHT Funding$2,500 |
| ResearcherJustin McWilliams, MD | Institution / CountryUniversity of California, Los Angeles (USA) | Award Year2011 | HHT Funding$2,500 |
| ResearcherTakeo Nishida, PhD | Institution / CountryYale University (USA) | Award Year2010 | HHT Funding$2,500 |
| ResearcherEls Marie De Gussem, MD | Institution / CountryGrace Hospital (Canada) | Award Year2009 | HHT Funding$2,500 |
| ResearcherSophie Dupuis-Girod, MD | Institution / CountryCHU de Lyon (France) | Award Year2008 | HHT Funding$2,500 |
| ResearcherRoberto Zarrabeitia, MD | Institution / CountryHospital Sierrallana (Spain) | Award Year2007 | HHT Funding$2,500 |
| ResearcherPinar Bayrak-Toydemir, MD, PhD | Institution / CountryUniversity of Utah / ARUP Laboratories (USA) | Award Year2006 | HHT Funding$2,500 |
| ResearcherGaetan Lesca, MD | Institution / CountryCHU de Lyon (France) | Award Year2005 | HHT Funding$2,500 |
| ResearcherTom Letteboer, MD, PhD | Institution / CountryUniversity Medical Centre Utrecht (Netherlands) | Award Year2004 | HHT Funding$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.
| Event | Institution / Country | Award Year | HHT Funding |
|---|---|---|---|
| EventHHT International Scientific Conference | Institution / CountryConference Host (Portugal) | Award Year2022 | HHT FundingTBD |
| EventChristopher McMahon Memorial International HHT Guidelines Conference | Institution / CountryConference Host (Canada) | Award Year2019 | HHT Funding$175,000 |
| EventHHT International Scientific Conference | Institution / CountryConference Host (Puerto Rico) | Award Year2019 | HHT Funding$27,000 |
| EventHHT International Scientific Conference | Institution / CountryConference Host (Croatia) | Award Year2017 | HHT Funding$61,500 |
| EventNorth American Vascular Biology Organization (NAVBO) | Institution / CountrySponsor - HHT Symposia | Award Year2016 | HHT Funding$5,000 |
| EventHHT International Scientific Conference | Institution / CountryConference Host (USA) | Award Year2015 | HHT Funding$33,000 |
| EventHHT International Scientific Conference | Institution / CountrySponsor - Speaker Travel Awards | Award Year2001 - 2013 | HHT Funding$70,500 |
| EventNorth American Vascular Biology Organization (NAVBO) | Institution / CountrySponsor - HHT Symposia | Award Year2014 | HHT Funding$10,000 |
| EventNorth American Vascular Biology Organization (NAVBO) | Institution / CountrySponsor - HHT Genetics Research Presentation | Award Year2009 | HHT Funding$10,000 |
| EventNational Institutes of Health (NIH) | Institution / CountrySponsor - Brain AVM Presentation | Award Year2008 | HHT Funding$2,000 |
| EventNorth American Vascular Biology Organization (NAVBO) | Institution / CountrySponsor - HHT Symposia | Award Year2007 | HHT Funding$2,000 |
| EventHHT Clinical Guidelines Conference | Institution / CountrySponsor - Expert Travel Awards | Award Year2006 | HHT Funding$60,000 |
| EventNational Institutes of Health | Institution / CountrySponsor - Physician Training | Award Year2006 | HHT Funding$5,000 |