The INADcure Foundation is governed by a Board of Directors and assisted by multiple advisors and committees who are dedicated to furthering research on INAD, promoting awareness in the medical community and the public, and supporting patients and families with the disease. We strive to include patient and family voices in all that we do, and always welcome members of the INAD community to be more involved with the Foundation and it’s work.
Founder & President
Leena Panwala is the Founder and President of the INADcure Foundation, the only nonprofit organization in the United States solely focused on the development of treatments, and one day a cure, for Infantile Neuroaxonal Dystrophy (INAD).
When doctors diagnosed her 2-year-old daughter, Ariya, with INAD in 2016, Leena refused to accept “there’s nothing you can do” as an answer. She immediately immersed herself in INAD and the world of rare disease. She spent her days (and nights) trying to understand the pathology of INAD and the current research. It wasn’t long after, that she, along with Kristin Phillips and Megan Thomas, also parents of children with INAD, established the INADcure Foundation. Since then, Leena has dedicated herself to its mission – to advance research for INAD in hopes of finding breakthrough treatments that could change the course of this devastating disease.
Leena graduated from Pennsylvania State University with a bachelor’s degree in Political Science. She lives with her husband Anil, and their two daughters, Ariya and Alaya, in Fairfield, New Jersey.
Director, Communications & Digital Fundraising
Consultant, Gene Therapy & Translational Research
Neil Hackett, PhD
Amanda Hope, MPA, CFRE