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Meet the Team
Denise Robinson
Executive Director
Denise Robinson
Executive Director & Director of Research
Denise was introduced to the EHE community in 2018 after a friend’s short battle with EHE. She has 20 years of clinical research experience, including Phase I-IV clinical trials in many diseases, including numerous rare and life-threatening diseases. Her career has been dedicated to working with pharmaceutical companies, patients, and doctors to advance critical research.
As the Director of Research, Denise oversees the operations of all EHE Foundation-sponsored research and the EHE research grants program. She is the Principal Investigator of the EHE Global Patient Registry and serves as a liaison with the global EHE research and clinical community.
Denise served on The EHE Foundation’s Board of Directors and volunteered on several working committees. She brings a breadth of skills and passion that have translated from commercial drug development and are now focused on finding treatments and a cure for EHE.
Maggie Cameron
Director, Development & Communications
Maggie Cameron
Director of Development & Communications
Maggie is an EHE patient who joined the EHE Foundation as the first full-time Director of Development & Communications. She's been with the Foundation since its founding, building and maintaining the website, advising on technical subjects, and planning social media. She spent 2023 working full-time as the Communications Manager for the Desmoid Tumor Research Foundation (DTRF), another rare disease patient advocacy group. Her work with the DTRF allows her to bring best practices in rare disease communication back to the EHE Foundation.
Diagnosed in 2011 with EHE found in the liver and lungs, she has undergone a liver resection and multiple tumor ablations. Living just south of Pittsburgh, PA, she has been lucky to find doctors familiar with EHE at UPMC and Hillman Cancer Center. With a 'watch and wait' approach, Maggie can live an active life. When she is not working at her computer, she enjoys spending time with her two grown children and hiking with her dog.
Kristianne Oristian, PhD
Director, Research & Engagement
Kristianne Oristian, PhD
Director, Research & Engagement
Originally from Maryland, Kristi now hails from the Research Triangle area of North Carolina. Kristi earned her BS in Biochemistry from Elon University and her PhD in Pharmacology and Cancer Biology from Duke University. Before joining EHE, Kristi spent over a decade in the Sarcoma research and patient advocacy community. As a scientist, she specializes in fusion-driven sarcoma biology, the Hippo signaling pathway, and preclinical model systems. She is passionate about the sarcoma community and advocating for the needs that make sarcoma patients special: rareness as a group and uniqueness as individuals. She enjoys research collaboration and is especially eager to make research accessible to the patients.
As the Director of Research and Engagement at the Foundation, Kristi will work closely alongside the EHE Foundation’s Executive Director to execute our strategic priorities in support of our mission to improve patients’ lives.
Outside of work, Kristi is known for her love of animals and the outdoors. If not at her desk, you will find her camping, fishing, cooking, or cuddling a critter with her husband and stepson.
Patty Cogswell
EHE Biobank Principal Investigator
Patty Cogswell
EHE Biobank Principal Investigator
Patty has a B.S. and M.S. in Microbiology and Immunology from the University of Rochester. Her career in cancer research spans 25 years, during which time she authored more than 30 research publications. For the majority of her career, she served as a research scientist and lab manager at the University of North Carolina at Chapel Hill Lineberger Cancer Center. Patty joined the rare cancer field in 2012, when she became manager of research for the Chordoma Foundation. In that role, she developed the Foundation’s biobank, cell line, and animal model repositories. In 2019, Patty founded Rare Biorepository Consulting LLC to help rare cancer foundations advance their research initiatives through specimen donation. She is excited to lead the EHE Biobank, sharing her experience and knowledge, with the ultimate goal of finding a cure for EHE.
Seth Haddix, PhD
EHE Biobank Coordinator
Seth Haddix, PhD
EHE Biobank Coordinator
Seth earned his B.S. from McGill University and a Ph.D. in Neuroscience from Texas A&M University, focusing on cancer and rare diseases, with an emphasis on disease mechanisms and treatment development.
In 2021, he started working as a Science Advisor with the CLOVES Syndrome Foundation. There, he identified the growing need for rare disease biobanking and pursued his interests in partnership with Patty Cogswell, EHE Biobank Principal Investigator, to gain expertise in biobank creation and management.
Seth brings this wealth of experience to The EHE Foundation, supporting efforts to accelerate research and improve outcomes for people living with EHE.
Sania Choudhary
Research Junior Fellow
Sania Choudhary
Research Junior Fellow
Sania supports the growth of the EHE Global Patient Registry by helping people with EHE share their lived experiences, building a stronger understanding of the disease, and moving us closer to improved treatments and better outcomes.
She is currently an undergraduate at the University of California, Berkeley, where she is studying Molecular and Cell Biology and preparing for a future career in medicine. Her introduction to oncology research began during her undergraduate studies, with positions as a research assistant in the Department of Cardiothoracic Surgery at Stanford and as a student intern in the Department of Thoracic Surgery at Massachusetts General Hospital. In these roles, she contributed to important projects in thoracic oncology, thoracic surgery, and early detection of lung cancer through screening.
With a special interest in rare cancers and patient advocacy, Sania joined the EHE Foundation in 2024. She brings her growing research expertise and passion for patient-centered work to the Registry, aiming to enrich the narrative of EHE through the voices and experiences of the people living with the disease.