Powering Through Adversity: Personal Trainer Shaun Kehoe’s Journey from Brain Surgery to Fitness Advocate

The I Care for Rare podcast reveals the challenges faced by the families caring for people who have a rare health condition, In this episode we delve into the challenging world of rare diseases with Sandra Markus, founder of iCare4Rare, and Shaun Kehoe, a certified personal trainer with a remarkable journey of his own. 

Zach, Sandra’s adult son with special needs, regularly works out with Shaun Kehoe. Unfortunately, many of those who need his services the most can’t get access to the necessary funding. In this show Shaun opens up about his own rare condition, cavernous angioma, and the series of brain surgeries he’s endured to treat his epilepsy. Despite these considerable obstacles, Shaun found solace and strength in fitness, turning his health struggles into a career dedicated to helping others overcome their challenges. He shares his experience of the importance of holistic approaches to health and the power of resilience in facing life's adversities.

I Care for Rare is more than just a podcast; it's a social advocacy campaign that seeks to drive reform in healthcare and community support systems for rare diseases. With over 3,000,000 Canadians affected by rare diseases, the absence of a comprehensive support strategy in Canada leaves many families grappling with uncertainty and fear. The campaign, aims to unite and empower those affected by rare diseases, representing their collective voice.

This podcast highlights the essential work of CORD (Canadian Organization for Rare Disorders) and their "Canada's Rare Disease Strategy," a comprehensive plan with five key action points. These points include:

• improving early detection,
• ensuring timely care,
• enhancing community support,
• providing access to promising therapies, and
• promoting innovative research.

"I Care for Rare" calls on both the Canadian Federal and Ontario Governments to amend the Health Protection and Promotion Act, aligning with the recommendations outlined in CORD's Rare Disease strategy.

We Need Your Help

Please help us make healthcare better for people with rare disorders in Ontario! We want to support individuals, families, and caregivers who are dealing with these uncommon health issues. 

Healthcare in Ontario is falling behind. That’s why we're supporting Bill 129 to change the Health Protection and Promotion Act. This law will help put into action the good ideas from the Rare Disease Working Group Report, which was made on March 10, 2017.

Here’s how you can help: 

• Sign MPP Bhutila Karpoche’s petition for an Ontario Rare Disease Strategy.
• Download our letters and send them to your government officials.

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