In this episode of The Clinical Research Coach, host Leanne Woehlke sits down with trailblazer Nasha Fitter—tech entrepreneur, rare disease advocate, and co-founder of both the FOXG1 Research Foundation and Citizen Health.

After Nasha’s daughter was diagnosed with FOXG1 syndrome, an ultra-rare neurological disorder, her world shifted. Instead of accepting the limitations of the current research landscape, she took action- building a foundation, galvanizing the scientific community, and redefining what’s possible for families facing rare disease.

What began as a grassroots foundation now drives innovative drug development, redefines data collection, and challenges the status quo in drug development.

In this conversation, Nasha shares:

• How a small, determined parent community raised $10M and launched a gene therapy program
• Why traditional research models fail rare disease patients—and how to fix them
• The power of patient-owned data and how platforms like Citizen Health are transforming access and insights
• How to build empathy for families navigating special needs
• What pharma gets wrong (and right) in working with advocacy groups
• Her vision for a precision medicine future—starting with ultra-rare

This is a story about courage, creativity, and a more inclusive, patient-driven future of medicine. Nasha’s bold vision and action oriented approach will leave you inspired and hopeful.

To Find Out More:

Nasha Fitter

https://www.linkedin.com/in/nashafitter/

FOXG1 Research Foundation:

https://www.foxg1research.org/

Citizen Health:

https://www.citizen.health/

In this heartfelt episode, we sit down with Katie Diaz, Managing Partner of the Dan Diaz Biotech Breakfast Club. Katie shares the deeply personal story of her father, Dan Diaz, whose ALS diagnosis changed the course of her life- and inspired her to continue the work he started.

Together we explore the importance of empathy, the emotional layers of navigating a rare disease and how Katie transformed grief into advocacy, mission and action.

Enjoy!

To Learn More:

Katherine (Diaz) Harakel

The Dan Diaz Biotech Breakfast Club:

https://thedandiazbiotechbreakfastclub.godaddysites.com/

In this powerful episode of The Clinical Research Coach, we sit down with Kay Kays — a 30-year pancreatic cancer survivor and passionate patient advocate. Kay’s story is nothing short of extraordinary. Diagnosed with one of the most challenging cancers to treat, she not only defied the odds but has spent the last three decades using her voice to push for better patient access to clinical trials.

With her signature honesty and infectious energy, Kay shares why she believes clinical trials should be the appetizer — not the dessert — in the treatment journey. We talk survivorship, advocacy, and the urgent need to change how patients are introduced to research as a care option. Whether you’re in clinical research, oncology, or simply need a dose of inspiration, this conversation is not to be missed.

To learn more about Kay Kays:

https://www.linkedin.com/in/kay-kays-2a993649/