Our Inspiration

This is Ivette from Puerto Rico. I’ve probably misspelled her name, so anyone out there, please correct me. She is our inspiration. I’m always so happy to see her every year. She’s got headphones on because she’s listening to the Spanish translator during a session.

Ivette has the lung disease of Hermansky-Pudlak Syndrome, but she’s in her mid 60s. She was in the last drug trial and continues to do well, which gives me so much hope as a member of the current drug trial. She’s very sweet and gentle and willing to share her story. Even though I can’t really speak to her the way I wish I could, I’m always so happy to see her every year. I hope she personifies my future.