Episode 10 – Finding Strength in Community

🎙️ Hosts: Erin Hubbard

🎤 Guest: Cyndi Frank

📅 Release Date: 10/07/2025

🔬 Topic: Resilience, Advocacy, and Rare Disease Awareness

🎧 Episode Overview

In this episode of These Kids Can’t Wait, host Erin Hubbard speaks with Cyndi Frank, a leading advocate in the Gaucher disease community. In recognition of Gaucher Disease Awareness Month, Cyndi shares her journey of raising awareness, connecting advocates, and building strong partnerships with pharmaceutical companies. Together, they discuss how collaboration, transparency, and communication between patients, advocates, and industry can drive meaningful progress in rare disease research and treatment.

Key Takeaways

✔️ The significance of Gaucher Disease Awareness Month

✔️ How advocates and industry can work together for better outcomes

✔️ The importance of trust and communication in rare disease partnerships

✔️ Challenges and opportunities in building sustainable collaboration

Resources & Links

Gaucher Community Alliance: https://www.gauchercommunity.org/

🌐 Learn more: thelostenzymeproject.org

📢 Follow us on social media:

https://www.linkedin.com/company/the-lost-enzyme-project

https://www.instagram.com/thelostenzymeproject/

https://www.facebook.com/people/The-Lost-Enzyme-Project/61551541563692/

📩 Contact us:

Email us at [email protected]

Producer: [email protected]

Subscribe & Stay Connected

Stay informed by subscribing to These Kids Can’t Wait on Spotify, Apple Podcasts, Youtube or Amazon music. If you find this episode valuable, please leave a review to help raise awareness for rare disease research.

In this episode, I accidentally mispronounced Gaucher disease as Gaucher’s a few times near the beginning. My apologies for the mistake—thank you for understanding!