Houses on a block all displaying a white cancer ribbon

The Launching of The White Ribbon Project

Advancing lung cancer awareness is the commitment of The White Ribbon Project. It is an unbranded international grassroots movement representing ALL. Decades of public health campaigns have left the public uneducated about their risk for developing lung cancer. In addition, failures in public health education to accurately represent lung cancer have led to delayed diagnosis, treatment, and negative opinions surrounding lung cancer.

How the ribbon began

Heidi Nafman Onda was diagnosed with lung cancer in October of 2018. The diagnosis was shocking for Heidi, her husband Pierre, and their children.

For instance, they questioned how they did not know the facts of lung cancer since Heidi has a Master's degree in Health Education and Pierre is a Primary Care Physician. Neither Heidi nor Pierre had ever received education that the main risk for developing lung cancer was simply having lungs. Therefore, Heidi regards the lack of awareness about the facts of lung cancer as a public health failure.

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Why suppress the complete story of lung cancer? Pierre notes during Heidi's diagnosis and treatment they felt alone. More importantly, advances in treatments for lung cancer have made it possible for Heidi to want to take action to raise awareness for lung cancer. “The public needs to know”, said Heidi.

In October of 2020, out of frustration over the lack of action on the part of cancer centers across the country for Lung Cancer Awareness Month, Heidi asked Pierre, “Can you make me a large white ribbon?”

It's about building a community

Soon after Heidi hung her white ribbon, they began receiving asks from friends and others impacted by lung cancer. Because a simple hand-crafted ribbon, made with love, became a symbol to start a conversation. In addition to those who have asked for a white ribbon, many of those are sharing. Advocates are using their white ribbon to start conversations within their community, cancer center, and other lung cancer advocates.

So, the ribbon launched a community commitment to reframing education, awareness, and removing the shame of lung cancer. Awareness starts at home.

Why the ribbon matters

In just four months, this movement has identified the problem of breaking the stigma created by public health messaging focused solely on prevention. Preventing lung cancer is the extent of public education. The unintended consequence is the belief those living with lung cancer are responsible. In addition, the public doesn’t know because they have never been told; there is much more to the story of lung cancer. So the project seeks to amplify a message that lung cancer awareness must include prevention, early detection, treatment, research, and survivorship.

More important is the agreement on the values of The White Ribbon Project; inclusive, unbranded, and sense of urgency. Firstly, the White Ribbon Project accepts it is the responsibility of the lung cancer community to control the message of lung cancer using every resource possible. Secondly, project members agree lung cancer messaging must demonstrate support, compassion, hope, and optimism. Thirdly, the community will celebrate victories, be intentional, and empowered. Finally, the movement is tackling the misperceptions about lung cancer and is busy adding teammates in almost every major city in the US and Canada, willing to take action and create change.

The potential of the advocacy ribbon

The ribbon is a symbol to unify! Heidi and Pierre note every ribbon states “You are not alone”. However, the build, ask, and share is much more than public education awareness. In addition, the ribbon is bringing together the lung cancer community with high impact potential.

For instance, those who join the movement need to appreciate the story and the mission. Importantly, management of the growth potential is a factor. Who will join; offer their skills, to advance the movement? So “the work” to build the ribbons will not be the sole responsibility of Heidi and Pierre. White ribbon production and funding have all been by Heidi and Pierre. A big part of the ask is first asking “What can I do”?

The White Ribbon Project's reach is far

In conclusion, video(s) and social media accounts have been created to share the story of The White Ribbon Project community growth. As of early February, Heidi and Pierre have made and shipped 498 white ribbons. The ribbons are in 33 states and also in Canada. Four major lung cancer organizations and 10 major cancer centers have joined the movement...is your cancer center and medical team featured?

You can experience the movement on The White Ribbon Project's Instagram and on Twitter. Advocates interested in joining and want to learn more about how they can participate and support the movement can contact Heidi and Pierre at nafonda@comcast.net.

The first article in a series about The White Ribbon Project.

Credit: Katie Brown with LUNGevity is the creator of The White Ribbon Project videos.

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