The Power of Community: The White Ribbon Project


The Greek meaning of evangelist is "bringing the good news." It's why I call my podcast the Research Evangelist Podcast. I love to share stories about people in life sciences who are doing amazing work to advance cancer research. And it's why The White Ribbon Project has captured my attention. The White Ribbon Project is a grassroots movement of lung cancer patients, advocates, clinicians, researchers friends and families with a mission to change the public perception of lung cancer by spreading awareness that anyone with lungs can get lung cancer. No one deserves lung cancer whether you smoked or not. But lung cancer is not just a smokers disease, as more and more people are getting lung cancer with no smoking history. The White Ribbon Project is proving that the power of a community that cares can be unleashed by individuals who wanted to make a difference - people that didn't set out to start a movement. It's because their story is so sincere and authentic that people like me have joined them.

 
 

The White Ribbon Project was started by Heidi and Pierre Onda in Denver, Colorado. Heidi was diagnosed with stage 3 lung cancer. And as a health educator with a masters degree in Health Education who never smoked, she was frustrated by the public perception of the disease and wanted to raise awareness that it can happen to anyone. In October of 2020, she wanted to put a big white ribbon (the color white representing Lung Cancer Awareness Month) on her front door so people would notice. Her husband Pierre, who is a primary care physician with a masters degree in Public Health and also an artist and wood working hobbyist, told Heidi he would make a ribbon for her. So he hand-cut a 2 foot ribbon from wood, sanded and painted it, and added the words "Lung Cancer Awareness." She proudly displayed it on her front door. Because it was made by hand with love, it represents more than just another ribbon. It is a powerful symbol of their commitment to make a difference in educating people about lung cancer. The mission of this grassroots movement is to change the public perception of lung cancer by raising awareness that anyone with lungs can get lung cancer. Read and listen to Heidi and Pierre talking with Keith Spiro on his Communicast program to hear them describe the project in their own words.

 
 

Heidi and Pierre's neighbors and friends took notice and asked if Pierre would make them a ribbon, which he happily obliged. And one by one, more people noticed and asked for a ribbon, and Pierre showed Heidi how to make them, and before you know it they were producing ribbons at a fast pace. They are so kind that they made a ribbon for anyone who wanted one. All they asked was to display it and take photos or videos for social media to help raise awareness that anyone can get lung cancer. And that's when I noticed. I saw the ribbons and then my friend Chris Draft asked me to get involved in his weekly Saturday Zoom gatherings of lung cancer advocates to talk about the project. I was hooked immediately because I saw the power of the story! It was not just a ribbon, it was a piece of art, handmade with love and intention. It reminded me of the Humans of New York, and it represented the modern faces of lung cancer from coast to coast standing up and being counted as a real humans with lung cancer. Very empowering! And Heidi and Pierre had a goal to get all 71 NCI-designated cancer centers to join the movement and show that lung cancer matters. Like previous movements such as HIV AIDS and breast cancer, the lung cancer community could come together and raise their voices to change the public perception. Lung cancer is not just a smokers disease and each person should know that you, or your loved ones, neighbors, friends or relatives can get lung cancer. The project also hopes that this awareness will lead to more funding for lung cancer research.

 
 

This movement really just started three months ago when Heidi put the first ribbon on her front door. But it has grown because it is a powerful story of grassroots community engagement. So far Heidi and Pierre have made over 450 white ribbons. And importantly, with each ribbon they ask that people do something with it - take action. So to me the key is that each ribbon, being handmade with care and love, requires anyone who asks for one to commit to the cause of taking action to raise awareness. Taking photos of themselves, their loved ones, their care team, their cancer center or hospital and sharing on social media. I decided that my support would involve going around Boston to take photos and give shout outs to all the pharmaceutical and biotech companies that are committed to lung cancer research. All of the major biopharma companies have research being done in the Boston area. And I also shout out to the research institutions in my area such as the Koch Institute at MIT, Harvard, Dana Farber Cancer Institute, Massachusetts General Hospital and many others. We are truly all in this together - patients, family members, caregivers, researchers, pharma companies, research institutions and clinicians. So many people have stepped up to get involved. It is inspiring to see the number of people who want to help! Which brings me to what happened this weekend in Florida.

  
 

Chris Draft drove from his home in Atlanta to join a group of advocates in Fort Myers, Florida who stepped up to help Heidi and Pierre by making ribbons. Remember, so far the Onda's have created and delivered over 450 ribbons - made by hand out of wood and shipped around the United States and Canada - all at their own time and expense! It is truly a grassroots effort. So when Katie Crouse, whose mother Melissa is a lung cancer survivor, offered to lead this group to build some ribbons, she brought together a team of volunteers to spend a Saturday making ribbons. And the ribbons made are all to the exact specifications of the original ribbon that Pierre made in Colorado - cut from wood, sanded and painted. This is how a grassroots movement builds momentum. Heidi and Pierre can only make so many ribbons. This Florida group shows that the White Ribbon Project can grow when people in the community step up and volunteer to help. While keeping true to the original ribbon, they got the jigsaw and all the materials together to build more ribbons. They hand-crafted 137 ribbons this day. Thank you to Katie, Melissa, Stephanie Peace, Bonnie and Mitch Ulrich, Chris Draft, and many others for this amazing commitment of your time and money to advance the mission of the White Ribbon Project. 



 



As the American cultural anthropologist Margaret Mead said, "never doubt that a small group of thoughtful committed individuals can change the world. In fact, it's the only thing that ever has." I am humbled and inspired by what this small group of people in Fort Myers did this past weekend, and that Chris Draft is now dropping off ribbons all across the state of Florida! The key to this project is that it's not about how many ribbons are made. It's about what action each person takes with the ribbon. There is a responsibility built into this - you can't just ask for one of these ribbons. You must make a commitment that you will respect the time and effort that went into the production of each ribbon. There is a covenant that is agreed to when you accept a white ribbon and join the project. This is powerful and can only be built when it is authentic and sincere. I am proud to be a part of The White Ribbon Project. I am grateful that Heidi and Pierre sparked this fire, and I am excited to join the hundreds of other advocates who have joined. To get involved, please reach out to me. 

#theWhiteRibbonProject
#gratitude
#lungcancer
#research

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