A father and patient advocate discuss Canavan disease and a daughter's experience on a gene therapy clinical trial

Lauren Celano, a board member of the National Tay-Sachs & Allied Diseases Association, interviews Lee Greenwood about his family's experience with Canavan disease and how patient organizations and innovative research have impacted their journey from the beginning.

The Participants

Lauren Celano is the co-founder and CEO of Propel Careers, a life science search and career development firm focused on connecting talented individuals with entrepreneurial life sciences companies. She has recruited for > 60 innovative life sciences organizations to help them hire talent and has coached thousands of students, postdocs, medical residents and professionals to advance their careers since co-founding Propel in 2009. Lauren presents often across the US and Canada to help build the life sciences workforce. Before Propel, she spent about 10 years in life sciences advancing drug molecules through SNBL USA, Aptuit, Quintiles, and Absorption Systems. She has a B.S. in Biochemistry and Molecular Biology from Gettysburg College and an MBA (focused in the health sector and entrepreneurship) from Boston University.  She is on Boards including: MassBioEd (Chair), MassBio, National Tay-Sachs & Allied Diseases Association; and Advisory Boards: the Professional Science Masters Program at Framingham State University and New England Graduate Women in Science and Engineering. 

Lee Greenwood and his partner, Lori, began advocating in the rare disease space when their youngest daughter, Noa, was diagnosed with Canavan Disease just before her first birthday. Big sister Max quickly joined the effort and it’s now a full-family affair (along with adorable pup, Gracie the Great, who’s always ready to do her part).

He’s been working as an advocate at the federal, state and local levels for the better part of his career. He fell in love with the possibility of policy while working as a senate staffer on the Hill in Washington, D.C., then began his advocacy career after law school lobbying on behalf of mental health practitioners. He, his partner, and their pup, had a two-year interlude to live and teach in southeastern Turkey, before moving back to the States to work for a state representative at the State House in Boston. For 6+ years he helped to build the advocacy department for a national animal welfare nonprofit organization, traveling the country giving a voice to cats, dogs and the people who love them. In his current role, he serves as Director of Government Affairs for an international management company.

The whole crew lives happily and chaotically in Dorchester.