Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with those living with LCA and IRDs in mind, but we invite all members of our community, including those in research, industry, and the regulatory communities to join any of the sessions, as we look ahead to a common goal of advancing treatments for rare retinal disease.
Today we chat with Tami Morehouse and Jack McCormick about self advocacy in the rare disease community.
Tami Morehouse made research history when at age 44, she participated in a clinical trial for gene therapy for LCA2 (RPE65). Ultimately, Spark Therapeutics developed the drug that was marketed as LUXTURNA® following Federal Drug Administration approval in December 2017. Tami volunteers in Sofia Sees Hope’s Family Connections program, which connects people within the LCA community to share information and provide support. She is also an SSH Ambassador. Our Ambassadors give encouragement to LCA patients and caregivers, they attend conferences, keep up with research, and share their stories and experiences to help others.
Jack McCormick of Ontario, Canada, graduated from Wilfrid Laurier University in Waterloo, Ontario, in 2018. Diagnosed with LCA2 due to a mutation in his RPE65 gene, Jack is a passionate advocate for inclusion and accessibility on all fronts. He initially tried to hide his blindness but that all ended when he got Jake, his beloved guide dog. In college he founded Eye To Eye, a student club whose goal is to illuminate stigma associated with vision impairments. He volunteers with Fighting Blindness Canada, including working on the 2018 Young Leaders Summit.
He is an organizational development consultant in the healthcare industry, is board vice chair of CNIB ON/QC and serves on the Metrolinx Accessibility Committee. In 2021, he launched the Lights with Jack McCormick podcast, what he describes as “my attempt to unlock the secrets to living a more meaningful and fulfilling life so that together we can find the lights in our life. Thank you for joining me as we connect with business leaders, personal development experts and inspiring people with stories to tell.”