STAFF

Executive Director – Elissa Taylor-Bustillo

Elissa’s most recent position was at the Greater DC Diaper Bank as their Senior Director of Development and Communications.

Elissa’s commitment to rare disease patient advocacy is deeply personal. After being diagnosed with juvenile diabetes, she founded the Fredericksburg Walk to Cure Diabetes in 2000, which has raised a staggering amount of funding for diabetes research and support groups in the DC-metro region. And after her father was diagnosed with pulmonary arterial hypertension, she went to work with the EveryLife Foundation for Rare Diseases as the organization’s Associate Director of Alliance Development, where she played a pivotal role in elevating the patient voice and advocating for the rare disease community.

Recently, her passion for rare disease advocacy was reignited when her seven-month-old son was diagnosed in utero with a rare disease that affects a mere 0.000102% of live births. These experiences have fueled Elissa’s dedication to the rare disease community and her drive to make a difference.

Elissa currently resides in the DC-metro region with her husband, Fredy, her sons, Brycen and Díon, and their rescue dog, Ace. In her free time, Elissa enjoys running her pro-bono pageant consulting business, gardening, and creating jewelry and clothing from upcycling.

You can reach Elissa at elissa.taylor-bustillo@grin2b.com.

 

Science Director – Tamara McNally

With 29 years advancing complex global drug development across pharma and biotech, Tamara most recently served as SVP of Global Clinical Operations at Neurvati Neurosciences/GRIN Therapeutics. Prior to this role, she held increasingly complex leadership positions at Merck, Novartis, Hoffmann‑La Roche, Boehringer Ingelheim, and Ovid Therapeutics leading global Phase I–III programs in Oncology, Infectious Disease, CNS, and Rare Disease.

A passionate advocate for families living with rare and ultra‑rare neurodevelopmental disorders, Tamara brings both scientific rigor and deep patient‑centered commitment to her role. As the Science Director of the GRIN2B Foundation, she will focus on strengthening clinical readiness for this emerging field—advancing early diagnosis, shaping natural history and clinical outcome strategies, and helping prepare the community for future therapeutic development. She also serves on the board of KIF1A.org, where she continues her long‑standing commitment to inclusion, excellence, and diversity in clinical research, working to ensure that rare‑disease families are seen, heard, and represented.