The Relay Family

Relay For Life became the biggest fundraiser in the world by creating a family-style event centered on the worst disease most Americans will ever encounter. Our local event features a trick-or-treat lap, comic heroes lap, frozen t-shirt contests, and races and games for people of all ages. Before the event, teams put together dinner dances, flamingo attacks, and yard sales. Cancer is a negative experience families face together. Relay brings the positive back into the experience.

…it can begin to create the environment we need…

That family atmosphere is part of what keeps people coming back year after year to the most successful Relays. We don’t talk about Relay as an organization–we talk about it as our Relay family. When I was chairing the event, we opened every meeting with a story about someone we knew who was fighting cancer. We closed every meeting with a recent positive–a new treatment, someone celebrating a cancer-free anniversary, a promising piece of new research. These ideas did not originate with me–but I saw the power in them.

Building the Relay Family

At every opportunity, we brought in a local angle about someone we knew and cared about. It reminded us both of the serious nature of what we were doing and of our personal connection to the disease. In doing so, we reinforced the idea of Relay as family. At Relay, everyone helps everyone else, whether with setting up a tent, organizing a team, or just listening to each other’s stories of tragedy and triumph.

Relay brings the positive back into the experience.

Our first Greater Fall River Relay was the night of my retirement dinner. Jane and I were supposed to retire together that night. We put an empty chair at the table in memory of her. But since our entire team was supposed to be at the dinner–and you are supposed to have a team member on the track at all times–several members of another team donned our shirts and became Walking with Jane for three hours.

Our Zebra Family

That is the power of family–and it is part of the reason our team goes back to Relay every year, despite the national American Cancer Society‘s spotty record on carcinoid/NETs. Our local Relay is supportive of every effort we make. It just wouldn’t be family-like for us to walk away from them–although I’ve been forced to walk my own involvement back a bit as our work on carcinoid/NETs has grown. Still, Walking with Jane will raise over $10,000 for that event this year.

…we reinforced the idea of Relay as family.

Carcinoid/NETs patients and their caregivers also form a tight family group. You see that the moment you find a support group–whether online or in the real world. You see it at NET cancer conferences, as well. Even the doctors who work on the disease behave in a more familial way toward their patients than you generally see doctors do. Part of that is their personalities: you have to be special to deal every day with a disease for which there is no cure–and for which you know what the end-game looks like far too well.

Bringing in the larger public

Part of it is the knowledge that a good number of their patients likely know the research and the options nearly as well as they do. Those things breed a humility in the doctors and researchers you don’t always see among medical professionals. None of us has an answer for this disease–and we are all–medical professionals and lay people both–painfully aware of the fact.

That is the power of family…

The question is, how do we create in the general public the same feeling about NETs that they have for Relay? How do we make those people who have no familial connection to the disease a part of our zebra family?

Building family through story

Again, I don’t have a complete answer to the question. I know that when I talk to a group of people about carcinoid/NETs, I tell them Jane’s story–highlighting all the common ailments doctors thought she had before discovering she had NET cancer. Nearly everyone in my audience has–or knows someone who has–irritable bowel syndrome. Many of the people in the room have either experienced the hot flashes that go with menopause–or seen their wives or mothers go through them. And many have known chronic insomnia, though few at the level Jane experienced it.

None of us has an answer for this disease…

Since they, or someone they know, have had those symptoms, there is an immediate connection: “This could be happening to me or my loved ones right now–this could be my story as easily as it is his.”

Building attention

That’s part of the reason I encourage people with carcinoid/NETs to tell their stories in as many public ways as possible. The more people are aware of the symptoms of the disease the more people will see the potential of this becoming their story. Once they begin to identify us, not as an insignificant other, but as someone suffering from the same ills as someone they know, they will begin more and more to include us within their family frame of reference.

‘This could be happening to me…’

Equally, the more we put our human faces out there–the more people hear our stories–the more they will conceive of this as a human problem they need to address. While there are some people who can ignore human suffering, there are more for whom a story of individual human pain is a call to do something. But if no one hears those stories, nothing changes.

Beyond the current zebra family

We need to use every event we sponsor or take part in to tell those stories. Our zebra events need to reach beyond our immediate community of patients and caregivers. And we need to find ways to get more people at mainstream events to hear what we have to say. That means volunteering to speak, when you can, and pushing the various media to get our stories out there.

…I encourage people with carcinoid/NETs to tell their stories…

One of the things I want to do next month is collect and tell as many Zebra stories as possible. I want to post a different zebra story every day in November–and I want to post 18-24 more stories–one for every hour–on November 10, NET Cancer Awareness Day. It is an ambitious goal–and one we cannot do without your help.

Building the future begins with you

I don’t expect our Social Mediathon to raise a ton of money on November 10. But it can begin to create the environment we need to have if we are going to get the general public to join our own walk to a cure.

(Editor’s Note: This is the eleventh in a series of pieces that will approach the problem of carcinoid/NETs not as a medical problem but as a marketing problem. If we are going to increase funding for the disease, we have to think of it as something other than a medical issue. We need to make it a human issue for the general public. In the final parts of this series, we’ll outline the beginnings of a Marketing Plan for NET cancer.)