ONCE UPON A GENE - EPISODE 183 - Wishing Well
There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a common theme.
EPISODE HIGHLIGHTS
Wendy Erler
It's my privilege to work in patient advocacy within the rare disease community. The people who have come into my life have impacted me, people have opened their hearts and shared vulnerable moments, fears and wishes. Over the last 20 years, my work has immersed me in rigorous science, clinical research, data and people driven to help patients and find treatments for rare diseases. But it's the families and parents who have fueled me to do more and champion their voices everyday. A wishing well is a term from European folklore, describing wells where spoken wishes are granted. When I asked an 11 year old boy, who lost his ability to walk, what he wished for, he wished to hold a spoon and feed himself so his mom could eat her own dinner. The power of wishing is fundamental in the rare disease community and we can all learn from the families that have boundless optimism and resilience.
Tom D’Amato
I work in patient advocacy and I'm a rare dad. The rare journey has been isolating, confusing and has led to some dark days. I found through therapy and working in the rare disease community that you can control your reactions and response in emergency mode. You can control how you care for yourself, your child and your spouse. I wish to never forget to never forget the beauty that comes from this journey. As I stand in front of the wishing well, reflecting on my wish for my family and the rest of the rare disease community, I wish to embrace the strength, wisdom and happiness that comes from this journey.
Sophia Cacciatore
I have the best job in the world where I get to meet the most incredible people with the fiercest minds and hearts. I get to build bridges and break down walls to make a little magic. I'm a space-maker. Just like Snow White singing in the wishing well, I will always be an echoing voice for families. I will echo all of your wishes until they roar so loudly that your wishes are answered.
CONNECT WITH EFFIE PARKS