The local family is leading the fight against Usher syndrome

Hanna and Kyle Love of Orillia are among many across the country celebrating Cortical Visual Impairment (CVI) Awareness Month in September.

In 2022 they founded the Usher Syndrome Warriors Foundation and in 2023 they donated $40,000 to Fighting Blindness Canada. This year the goal is $50,000.

Fighting Blindness Canada reached out to the Loves as part of a campaign to raise awareness about CVI and other genetic eye diseases. Their contributions to the fight against blindness are directly related to the goal they set for their own foundation: finding a cure for Usher syndrome.

“Without the genetic testing, we wouldn't have started (the Usher Syndrome Warriors Foundation) … I wish everyone could get it,” Hanna Love said.

Her two sons, Kolton and Karson, now seven and five, were diagnosed with hearing loss at a young age. However, the setback has not stopped her from taking part in any activity, including competitive sports.

The diagnoses encouraged the Loves to undergo genetic testing, which allowed them to better understand their circumstances and prepare for what awaits them.

“Their vision isn't compromised yet, but that's the path our guys will eventually take,” Love said.

Both Kolton and Karson are expected to need assistance with their vision loss, such as a walking stick or a dog walker.

Genetic testing is the only way to learn more about the causes of inherited retinal disease (IRD), and the Loves are committed to it.

The Usher Syndrome Warriors Foundation has small roots, but the Loves are motivated to make big changes in research and awareness.

They traveled to Rochester, NY this year to attend their first Usher Syndrome Conference.

“It was very eye-opening, no pun intended, to see what her future holds,” Love said.

The experience was educational and connected her to a community of people with similar experiences.

The two Love boys enjoy a range of activities including motocross and hockey. Despite all the disruptions, the Loves want to offer their boys all the experiences that interest them for as long as possible.

Although Love is overwhelmed at times, she understands the unique circumstance that both boys' diagnoses stem from genetic testing.

“We were told it was a coincidence,” Love said of the time Kolton was first diagnosed with hearing loss.

The Loves have since conducted further investigations and increased attention to respond quickly and appropriately.

“With these tests, we would see the effects of their vision loss before they would see it themselves … because they can see so deeply into their vision,” Love said.

The Loves have organized a number of fundraisers through the Usher Syndrome Warriors Foundation, including golf and baseball tournaments. The funds will go directly to Fighting Blindness Canada, which Love considers its “biggest ally in the fight against retinitis pigmentosa, the eye disease directly linked to Usher syndrome,” Love said.

For Love, it is important that the money raised through the Usher Syndrome Warriors Foundation stays in Canada and goes directly to research related to Usher syndrome.

“It's rewarding to see the research progressing and the community coming together…We're still very small, but we've been able to make some connections…with other families,” Love said, adding that sharing referrals and Resources were helpful as a large part of their foundation.

Although it was challenging at first, Love said the growth of the community and the generosity of the people involved with the Usher Syndrome Warriors Foundation helped make it easier. She said they are nearing their goal of $50,000. However, calculations for this year's contribution to Fighting Blindness Canada will be made in December.

Promoting genetic testing and awareness of IRD is important for the future of Loves.

“I feel like we're ahead of the curve now and don't have to wait until it's almost too late to figure out what these treatments are,” Love said.

Given all the current research, Love said, “we're pretty optimistic that there should be something that could be treatable within (Kolton and Karson's) lifetime.”

For more information about the Usher Syndrome Warriors Foundation, including how to donate, click here.