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After 35 surgeries and a lifetime in hospitals, Lynsey Chediak is changing healthcare policy from the inside.
Pushing Forward with Alycia introduces Lynsey Chediak, a disabled woman and rare disease advocate whose lived experience has shaped work spanning government, global health policy, and biotech. Lynsey shares growing up with arthrogryposis alongside an unaffected twin sister, realizing her difference at school, while also navigating chronic pain, limited medical answers, and systems not built for patients. Additionally, she speaks about how insurance barriers before the Affordable Care Act impacted access. Lynsey discusses rare disease priorities, which includes faster diagnosis, better treatment access, and policy change. Her role at BioMarin involves work to remove prior authorization in California and urging listeners to meet their local representatives. She also recounts ignoring neck pain that resulted in surgery, underscoring self-advocacy, and closes with her mantra that people are stronger than what doctors and medical charts suggest.
A Quote from Lynsey
Everyone is so much stronger than their medical chart, than a flippant doctor’s response about what they may think they see.
~ Lynsey Chediak
Mindset Shifts & A-ha’s
⚡ An Instant Connection
🩺 Doctors List the Problems, But Don’t Forget the Pros
🌱 Growing Up Differently
🧍 You Only Know the Body You’re Born In
🚧 Challenging Healthcare Norms
🎭 Now I Blend, and It’s Emotionally Complicated
🧬 Cancer vs. Rare Disease: The One-Gene Difference
📣 Raising Awareness and Advocacy
⏱️ Ending Prior Authorization Delays for Rare Disease Patients
💪 A Message of Strength and Hope
📊 Stronger Than the Medical Chart
🤝 Get Involved
Skip-To Map
00:00 Podcast Welcome
00:25 Meet Lynsey Chediak
02:35 Growing Up a Patient
05:25 Twin Identity Moments
09:51 Femur Surgery Breakthrough
12:05 Insurance and Preexisting Care
16:10 Blending and Hidden Disability
18:42 Rare Disease Advocacy 101
21:30 Policy Work and Prior Auth
24:40 How to Support Locally
26:26 Broken Neck Wake Up Call
28:55 Doctors Listening Struggles
31:44 Pushing Forward Mantra
32:50 Final Thanks and Outro
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Stay tuned for more inspiring conversations on Pushing Forward with Alycia. Open hearts, clear paths. Let’s go.
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