jenna shea

Jenna Shea

Jenna, a teacher in the greater Toronto area, is a mother to two little girls and a member of a family affected by Huntington’s Disease (HD). Over the last several years, Jenna has taken on an active role as a patient advocate for those affected by HD. She is currently a mentor for the Youth Mentorship Program through the Huntington Society of Canada (HSC) and has supported HSC’s efforts to raise awareness by sharing her story of HD at conferences and other educational forums within the Canadian community and internationally. In 2018, Jenna became a member of HD-COPE, a coalition for patient engagement that seeks to incorporate the patient-voice in global therapeutic development efforts for HD. Since joining HD-COPE, she has shared the experiences and needs of those affected by HD with regulators, researchers and industry professionals through her role on various advisory boards.  In 2019, she joined Clinical Trials Ontario’s ‘College of Lived Experience’ and in 2020 became a member of the Ontario Drug Policy Research Network’s Citizens’ Panel. Most recently, Jenna has joined the Huntington’s Disease Youth Organization (HDYO) as the Project Coordinator for the Mentorship Program in the United States. Jenna is passionate about sharing her lived experience in the rare disease community as a caregiver navigating the Canadian health care system and believes that incorporating the patient’s voice into the process is integral to effective health care.