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Local family organizes Orangeville’s first community walk for scleroderma

May 7, 2026   ·   0 Comments

Event honours organizer’s late father and family members who have been affected by the disease

By Joshua Drakes

A first-time community walk is set to bring new attention to a lesser-known but devastating disease in Orangeville this June.

The inaugural scleroderma awareness walk is set to take place on Sunday, June 7, from 10 a.m. to 1 p.m. at Island Lake Conservation Area.

The route is being finalized with guidance from the Scleroderma Society and has been planned to ensure access to washrooms and a welcoming gathering space near the pavilion.

At the heart of the walk is a deeply personal story from event organizer Stephanie Janes.

“I’ve had multiple family members now affected by the disease scleroderma, but I lost my father Jan. 1 of 2025, and it was a long, hard battle of 16 years with the disease,” she said. “I just thought what a great way to honour my dad and take something that was so sad and turn it into something that’s so powerful.”

Her experience watching the slow, painful progression of the disease in her father, including frequent travel for treatment and experimental therapies, shaped her determination to do something constructive and hopeful in his honour.

Stephanie’s son, Jack Mortimer, has played a key role in building momentum through social media, managing the online donation page, and assisting with the silent auction and promotion.

The event will feature not only a community walk, but also a silent auction with approximately 30 donated items, already generating strong support. In just one week of early efforts, the initiative has raised $772, with an overall fundraising goal of $5,000, all of which will go directly to the Scleroderma Society.

Representatives from the organization will be on site with information, resources, and support for anyone affected by the disease or wanting to learn more.

Scleroderma is a rare, chronic autoimmune disease characterized by the immune system triggering excessive collagen production, resulting in the hardening, thickening, and tightening of the skin and connective tissues. It can also damage blood vessels and affect internal organs like the lungs, heart, kidneys, and digestive tract.

Scleroderma often receives less research funding and public attention. The walk aims to change that locally by highlighting both the physical and mental toll of the disease, as well as the impact on families who support loved ones through long, difficult journeys.

The event has quickly grown beyond Stephanie’s original idea of a small walk with friends, family, and longtime clients from her work as a local hairstylist.

“So this started off as something small, meant for my people, my family,” Janes said. “Then I talked to the Scleroderma Society, and they said they’re going to bring people, get permits, and they were going to reach out locally, and it just blew up from there.

“It’s just awesome to see that people have noticed what I’ve posted on social media and stuff, and the community is coming forward and just giving back, it honestly just makes my heart feel so full.”

With local residents, businesses, and service clubs beginning to come forward with donations and commitments to attend, a family tribute is turning into a broader community effort to raise awareness, show support for those affected, and contribute to the search for better treatments and, one day, a cure.

“Please consider coming out and supporting us,” Janes said. “We’re helping people who are suffering from this disease, and they deserve to feel heard, seen, and supported.”

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