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What does it really take to maintain independence when your body is changing?

For people living with rare diseases, that question becomes part of everyday life—navigating changes in mobility, access to care, and the challenge of finding the right support.

In this episode of Rare Connection, I speak with Alexis Baker, who shares her journey to a diagnosis of Friedreich's ataxia, a rare, progressive condition that affects coordination, balance, and independence. Like many in the rare disease community, Alexis went through multiple doctors and specialists before genetic testing provided answers.

We also take a moment to clarify an important distinction: “ataxia” is a symptom—referring to loss of coordination—while Friedreich’s Ataxia is a specific genetic disease that many people may not recognize until it impacts someone they know.

But Alexis’s story doesn’t stop at diagnosis.

She turned her experience into purpose by founding RiseUp, a nonprofit focused on helping people access mobility devices like walkers and wheelchairs—tools that can restore independence but are often out of reach due to cost.

In this conversation, we discuss:

• The early signs and long road to diagnosis
• What it’s like living with Friedreich’s Ataxia day to day
• The challenges of mobility, safety, and maintaining independence
• Barriers to accessing mobility equipment—and why patients often have to adapt
• The reality that many rare disease patients must travel long distances to reach specialists, often at academic medical centers
• And how new treatment options like Skyclarys are beginning to change the outlook for the FA community

This episode highlights a reality many patients face: access to care isn’t just about finding a doctor—it’s about being able to get there, having the right equipment, and having a community that understands the journey.

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