A turn toward family

I had to be up early this morning for the Fall River Half Marathon. I wasn’t running in it myself, but a number of people were running to raise money for Walking with Jane. I wanted to be there to hand out shirts and cheer them on. As a result, I heard something on the radio about family that sparked a new idea about how we get people who don’t have the disease to care more about carcinoid/NETs.

People are hungry for the stories we have to tell.

The person being interviewed has just written a book about why people become involved with terrorism. It is based on his interviews with people who do and people who don’t. What he found is people become terrorists for similar reasons they join gangs: they are looking for a supportive family environment.

Expanding the zebra family

That is, admittedly, a gross oversimplification of what he said. But when I think about all the highly successful organizations I’ve been a part of–or even witnessed–they all function as very caring extended families. Good support groups–whether for illness, grief, or other issues–all have the “I’ve got your back” philosophy that derives from family. If you look at the carcinoid/NETs community you very quickly see that it shares those values.

…they are looking for a supportive family…

The question becomes, how do we get people outside our carcinoid/NETs community to become part of our family of zebras? And the carcinoid/NETs community does function very much as a family. We look out for each other, share information–even, given the opportunity, socialize together. We also share things we would rarely share outside that community. Diarrhea and gas are not normal staples of conversation outside people one is fairly comfortable with.

Growing a family environment

A non blood-related family grows out of common, shared experiences. The major cancers have an advantage over us in this area. Most people have some experience with lung cancer, breast cancer, colon cancer and prostate cancer. They have had a relative or friend with that cancer and have seen, even if at a distance, what those cancers do. Television PSAs extend that reach by showing people with lung cancer or breast cancer.

…the ‘I’ve got your back’ philosophy that derives from family…

The number of people with carcinoid/NETs is significantly smaller. Far fewer people have any experience with the disease within their family or within their immediate circle of friends. If we are going to build that familial feel we will have to rely on other means of creating shared experiences.

My extended family experience

Over the course of my career, I’ve built a number of successful organizations against fairly long odds by building a spirit of family among a diverse group of human beings. I’d like to say I have a formula that works to bring that about. But the truth is, I don’t. Every effort of this kind is different in the details and the approach. But there are some common bits.

…we will have to rely on other means…

Building anything begins with understanding the people we are working with and–especially in this case–the people we are trying to reach. That means we need to listen carefully to the people around us and attempt to understand what it is they need. That sounds counter-intuitive–but it is reality. To get people to care about what we care about, we first have to learn what they care about and care about that as well as what we care about.

We have to care first

And we can’t pretend we care. It has to be real. People ask me, for example, why I bother with Relay for Life and the American Cancer Society. Frankly, we get very little direct help from ACS. NET Cancer Awareness Day is not even listed on their calendar. As recently as two years ago, the people running their New England conference didn’t know the word “zebra” mattered in the cancer community.

…we need to listen carefully to the people around us…

But while I will admit that carcinoid/NETs matters more to me than other forms of cancer, I also know people who have survived–or died from–breast cancer, lung cancer, colon cancer, pancreatic cancer, adult and childhood leukemia, brain cancer, both Hodgkin’s and non-Hodgkin’s lymphoma, prostate cancer, melanoma, squamous and basal cell skin cancers, bladder cancer, kidney cancer, liver cancer, bone cancer, uterine cancer, cervical cancer, ovarian cancer, testicular cancer, thyroid cancer–seemingly every form of cancer there is.

We are family

And I care about all those people and what they experienced, just as I care about people with Parkinson’s, Alzheimer’s, heart disease, kidney disease, and those who are homeless or don’t have enough to eat. As John Donne says, “No man is an island… Any man’s death diminishes me, because I am involved in mankind.” Equally, every person’s illness, weakness or poverty–of whatever kind–concerns me, for I am involved with humanity.

…we can’t pretend we care. It has to be real.

Whether those other people care about my illness or hurt does not concern me. And it cannot concern us. If we want others to genuinely care about carcinoid/NETs, we have to genuinely care about their situation first. By doing so, we extend an invitation to them to truly join our family. Over time, that invitation, sustained by constant, demonstrable caring on our part, will bear fruit that is helpful to us–not in every case, but in enough to make a difference.

Getting out of our shell

People do things–good or evil–out of the desire to fulfill a need within themselves. This is the key to all successful marketing efforts whether for a car, a political party, or a disease.

…enough to make a difference.

Carcinoid/NETs tends to make us more insular. The very nature of its symptoms makes us leery of social events and speaking in public. Yet we need to become increasing active outside the comfort of our support groups. We need to get out and listen to the needs of others. But equally, we need to find places and times to tell our stories so that we can reclaim our place in the family around us.

Telling our family stories

Earlier this week, I announced a new awareness campaign that is aimed at doing just that during the month of November. I hope you’ll consider taking any of the three actions I suggested there. People are hungry for the stories we have to tell. That is another part of building a family-like relationship.

(Editor’s Note: This is the tenth 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. Another way of building family is through shared experiences. That is the subject of my next post in this series. Those of you reading this when the series was initially posted will notice that I’ve added two new parts to the series–and that today’s post is not what I originally planned it to be. The outline of the plan will now be Part 12.)