Jack McCormick: A Triumphant Experience with Gene Therapy

Jack McCormick’s story is inspiring and uplifting. As one of the first Canadians to receive Luxturna, Canada’s first approved gene therapy for inherited retinal diseases, McCormick’s experience not only reflects his personal triumph but also highlights the expansive potential of modern medicine.

Diagnosed with cone-rod dystrophy as a toddler, McCormick was initially told that his vision impairment was permanent and untreatable. “They told me my vision would be stable and that even if we knew the cause of my vision loss, there was nothing that could be done,” he says. However, as he entered his teens, McCormick’s vision unexpectedly deteriorated, eventually leading him to a new diagnosis: Leber congenital amaurosis (LCA), a genetic disorder that causes severe visual impairment. This revelation — that his condition would worsen without intervention — was daunting.

Determined to not just cope but thrive, McCormick got involved with Fighting Blindness Canada (FBC) as a high school student. “I’ve been involved with FBC as a volunteer, a donor, a participant, an organizer of the Young Leaders Program, and also a beneficiary of the advocacy and research that FBC has contributed to,” he says. From organizing a Dinner in the Dark fundraiser to participating in public speaking and media events to forging a rich relationship with his mentor through the Young Leaders Program, McCormick’s involvement with FBC became a cornerstone of his life. This culminated in his involvement in FBC’s crucial advocacy for Health Canada’s approval of Luxturna — the new gene therapy that would end up changing his life

McCormick’s and FBC’s perseverance paid off when Luxturna was approved in Canada in 2020. McCormick was fortunate to receive the treatment in 2022, funded privately before provincial health coverage took effect. “Had I waited for governmental funding, my vision might have deteriorated past the point of eligibility for the treatment,” he explains. “I’m very fortunate that I was able to advocate for myself and obtain funding.”

The impact of Luxturna on McCormick’s life has been profound. His vision has not only stabilized but improved, enhancing his ability to see in low light and to perceive a broader spectrum of colours. “The way it has impacted me the most, though, is that it has taken a huge weight off my shoulders,” he says. “I’m no longer worried about what could be—there’s more certainty in terms of what I’ll be able to see in the future.”

Today, McCormick is actively involved in numerous disability and blindness organizations. He has sat on various boards for CNIB, is on the People & Culture Board Committee at Vision Loss Rehabilitation Canada, and is an Accessibility Committee Advisor at Metrolinx. In recognition of his dedicated volunteer work with FBC, McCormick received the 2019 Ontario Medal for Young Volunteers, the highest honour a young person can receive from the Government of Ontario.

“I’ve had to learn ways to excel in a world that’s not built for me,” says McCormick. Despite the challenges, excel he has. McCormick is an avid long-distance runner, loves to ski and do water sports, continues to volunteer, and is an HR manager at a major tech company, where he focuses on creating inclusive environments and was recently recognized as the ADP Canada Rising Star of the Year.

As FBC marks its 50th year, McCormick is a living testament to the organization’s achievements and the ongoing need for advanced treatments for various visual impairments. “The work isn’t over,” he says. “We need to keep pushing so that no one loses sight that they don’t have to.”