Building a movement, one ribbon at a time with Heidi and Pierre Onda

100 Inspiring Voices | Episode #31 | Heidi & Pierre Onda | Building a movement, one ribbon at a time

Overview

This is a story about hope, battling stigmas, and finding a way to be seen when you feel invisible.

I speak with Heidi and Pierre Onda, the creators of The White Ribbon Project, about how they accidentally started a grassroots movement to spread the word that “anyone with lungs can get lung cancer.”

Highlights

2:30 – “Why didn’t I know that there are other risk factors other than a smoking history? I’ve never smoked a cigarette in my life and I was blindsided by this. Not only a lung cancer diagnosis, but the fact that it was late stage.”

4:30 – “Here are all these women putting themselves out there to try to put a real face of lung cancer on the radar of the public and increase awareness, and here I am sitting here not doing anything, and Pierre and I have these health backgrounds… and it felt irresponsible to not be doing anything and just hope that people with more advanced disease would take care of this for me.”

6:00 – “We were all getting the same type of dismissive responses. Sometimes we were just getting ignored. And as we got closer and closer to Lung Cancer Awareness month, and we were literally being ignored and dismissed.”

6:20 – “I became extremely frustrated and said to Pierre ‘I wish you could just make a big white ribbon for me that we can put on our front door’ and I don’t have to ask permission to do that, I don’t have to get approval from anybody, this can be screaming ‘I have lung cancer. I live in this house’… and I don’t feel powerless anymore, I feel I have some control of my voice.”

7:55 – “Before I knew it it was one extra, then it was five, then it was 20. And people were feeling empowered”

9:05 – “The more people who want it and will stand up and tell their stories and get people to understand that no one asks for a disease – no one deserves a disease – that they will empathize with our community and want to learn more.”

13:30 – “It’s [about] mobilizing all of the great people who are currently involved in lung cancer advocacy, in survivorship, in just providing support for each other; connecting them, and then mobilizing that community to then lead to more research, more funding, other things. It’s really about connecting the community and then allowing those other components of the community to do their work more effectively.”

19:15 – “Let’s call [smoking] what it is: It’s an addiction.”

19:45 – “Why should somebody be ashamed of something that was an addiction?”

22:45 – “For us, the initial situation was a bit of an emotional concussion, and you can get lost in that rabbit hole of just focusing on yourself and the things that are challenging for you. But it is and has been so therapeutic to start focusing outside of your world and start focusing on others.”

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