CureCMT4J/Talia Duff Foundation is an all-volunteer non-profit organization dedicated to developing a treatment or cure for CMT4J.
Founded in June, 2016, CureCMT4J’s mission is to generate awareness and support for the expedited therapeutic development of treatment or cure for Charcot Marie Tooth Disease, Type 4J (CMT4J).
CureCMT4J views its secondary mission as an advocacy organization, providing a voice and platform for rare disease advocacy and research through speaking engagements, rare disease conferences and social media education, awareness and fundraising campaigns.
Who We Are
Jocelyn Duff, Co-Founder, Executive Director – Jocelyn is Mom to her daughter, Talia, who has CMT4J. Jocelyn and her husband, John, founded CureCMT4J in June, 2016 after finally receiving a diagnosis of CMT4J for Talia, following a six-year diagnostic odyssey. Since 2016 she has led the efforts of CureCMT4J in furthering treatments for CMT4J. Jocelyn was a physician assistant in internal medicine and family practice for 20 years before starting CureCMT4J. To read more about how Jocelyn is in fighting for and spreading awareness of CMT4J, as well as other rare diseases, visit https://rareparent.com/
CureCMT4J has both a Scientific Advisory Board, as well as a general Board of Directors. CureCMT4J/Talia Duff Foundation Inc. (Tax ID: 81-3019217) is a Massachusetts corporation. Federal tax exempt status as a public charity under Section 501(c)(3) has been approved by the US Internal Revenue Service.