In this heartfelt and candid episode, Alexis and Jacob, both living with cystic fibrosis (CF), open up about the profound mental health challenges they've faced in their journeys with the chronic illness. From the weight of constant medical treatments to the emotional toll of unpredictable flare-ups, they share personal stories of anxiety, depression, and the isolation that often accompanies life with CF.
In this eye-opening episode, Jacob and Alexis from the Live Fearlessly Foundation discuss their tireless efforts to advocate for disability rights at the legislative level. From pushing for policy changes that better support people with disabilities to tackling systemic barriers, they share the personal and professional challenges that fuel their work. Alexis opens up about a heartbreaking personal experience—losing access to the cystic fibrosis “miracle pill” due to an insurance issue—and the devastating impact it had on her health. Together, they explore the intersections of healthcare, insurance, and legislation, highlighting how crucial it is to protect access to life-saving treatments and ensure fair policies for the disability community. Tune in for a powerful conversation on the need for change and the ways we can all advocate for a more inclusive society.
Part 2 to our debut episode, insightful Jacob Venditti and Alexis Smith from Live Fearlessly Foundation, educate host Drew Harrison on what it is like to be a patient. "Together we are stronger and together we will continue to make a difference".
In this debut episode, I dive deep with special guests Alexis Smith and Jacob Venditti, founder of the Live Fearlessly Foundation.
Join me as we dive into an extraordinary conversation with Jacob Venditti and Alexis Smith, two inspiring individuals living with cystic fibrosis. Together, we explore their experiences navigating clinical trials and the game-changing moment when Vertex Pharmaceuticals' innovative CF drug arrived "just in the nick of time." In this episode, we delve into critical topics:
The inclusion/exclusion criteria in clinical trials.
The life-saving difference innovative therapies can make.
The resilience of the human spirit in the face of chronic illness.