Jenna Shea, Toronto, Ontario, Canada

Jenna, a teacher in the GTA, is a mother to two little girls and a member of a family deeply affected by Huntington’s Disease. Over the last several years, Jenna has taken on a fairly 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 with Roche-Genentech, Wave Life Sciences, UniQure, Azevan, Novartis, Triplet Therapeutics and CHDI. In 2018, Jenna was presented with the “Change-Makers Award” by the Neurological Health Charities of Canada for the care she provides to her mother who lives with HD. In 2019, she joined Clinical Trials Ontario’s ‘College of Lived Experience’ and most recently, has become a member of the Ontario Drug Policy Research Network’s Citizens’ Panel.

Prior to her involvement with HD, Jenna worked with Canada’s leading national youth organization as a project support leader. During her role with that organization, she supported young people from various socio-economic and cultural backgrounds. It is her passion for working with young people and her desire to make a difference in the lives of people affected by HD that makes her excited to work with HDYO as the Project Coordinator for the Mentorship Program. Growing up in a family affected by HD, Jenna understands that isolation and lack of peer understanding can present challenges for young people affected by HD and knows the value and importance of the support of positive role models. If you have any questions about the Mentorship Program or would like to get involved, please contact Jenna via email at jen@hdyo.org