A mother, advocate and one woman's global fight for access. Beth Vanstone is working to ensure rare disease patients don’t have to wait for the treatments they need to survive.
Sometimes the most powerful friendships begin in the most unexpected places. Beth Vanstone and I first connected on social media. At the time, we were simply two moms navigating the complicated, emotional, and relentless world of cystic fibrosis. But eventually the online messages turned into something more meaningful. Then, Beth attended one of The Bonnell Foundation’s Gala events. That’s when we finally met in person. And from that moment on, we became dear friends. It’s proof that social media, when used for connection and purpose, can build incredible relationships.
But what inspires me most about Beth isn’t just our friendship. It’s her relentless determination.
Beth is the mother of Madi, who was diagnosed with cystic fibrosis at just eight months old. Suddenly Beth was navigating a healthcare system, researching treatments, learning medical language, and fighting for her daughter’s future. Beth didn’t stop there. Instead of focusing only on her own family, she chose to fight for every family. Today, Beth is a powerful advocate in Canada and a member of the Ontario Rare Action Group, where she works to improve access to life-saving therapies for people living with rare diseases like Cystic Fibrosis.
And the reality she’s fighting against is one many people don’t understand.
Most healthcare systems, not just in Canada but around the world were built to treat common diseases. They weren’t designed for rare conditions that affect smaller populations. Because of that, patients with rare diseases often face enormous barriers: long approval timelines, delayed access to medications, and exhausting advocacy battles just to receive treatments that already exist.
In some cases, patients wait months — even years — for medications that could dramatically improve or extend their lives.
Beth is working to change that.
Through her advocacy, she’s pushing for reforms that could make a real difference for patients across Canada and beyond:
• Faster access to innovative therapies
• Improved newborn screening programs
• Better diagnostic pathways
• Centers of excellence for rare diseases
• Removing financial barriers like deductibles that prevent families from accessing public programs
And she’s also raising an important global conversation.
Here in the United States, lawmakers have debated policies like the Most Favored Nation Model, which look to international drug pricing systems like those in Canada and Europe as a model.
But Beth reminds us that every system has challenges, and for rare disease patients, those challenges can be life-changing.
Because when access to medication is delayed…
Access is denied.
And that’s why advocacy across borders matters.
She’s not just advocating for her daughter.
She’s advocating for every patient still waiting for their breakthrough.
And today, we’re talking about what needs to change and how all of us can help make it happen.
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