The madness that is the NET Cancer Social Mediathon
I wonder, sometimes, just how crazy I am. One year ago, we tried our first NET Cancer Social Mediathon on social media platforms associated with Walking with Jane. Our audience peaked at about 3000 viewers, mostly on our Facebook page. The idea grew out of the Relay for Life Social Mediathon I’d run earlier in the year that had raised close to $2400 for that event.
…people can’t support what they don’t know exists.
We raised no money with last year’s NET Cancer Social Mediathon. That was not really the point of the exercise. Rather, the idea was to raise awareness of the disease and its symptoms in the larger community. Originally, I was hoping for a Jerry Lewis-scale fundraising bump, but the further I got into putting it together, the more I realized it was the information that really mattered most.
Experiments with the social media form
Honestly, the audience was smaller than I’d hoped. But there were some good conversations started during the 18 hours we were on–and most of the audience came away with a better understanding of carcinoid/NETs than they came in with.
…I realized it was the information that really mattered…
This spring, I did another Relay for Life centered Social Mediathon. It bombed–and bombed rather badly. We didn’t raise much money–which is the point of that exercise–and we had a very small audience. I don’t think we had 300 views the entire day. Part of that was it was a nice, warm spring Saturday. The Relay Social Mediathon is a more local audience–and nice weather locally… I’ve watched what nice weather does to the audience for even the most interesting things I post online. It isn’t pretty.
Building an audience requires faith
But I am nervous about Monday’s event, even though its audience is more global in reach. Walkingwithjane.org may have viewers from more than 120 different countries, but that’s no guaranty of a large audience on any given day. Yesterday, we hosted 156 viewers on this website–but Saturday only saw 14.
…the audience came away with a better understanding of carcinoid/NETs…
Still, I have to have faith that if we build it, they will come, to quote Field of Dreams badly out of context. That means inviting people in the carcinoid/NETs community to share their stories, trying to draft the luminaries in the field to come online for half an hour or so to talk about themselves and what they are doing, being ready to moderate discussions in half a dozen places simultaneously, and getting my own written and recorded segments edited and in position to go.
Getting the word out
And I’m hoping that some other websites and pages will pick up all or part of the event and share it with their audience. The idea here is to get the word out about carcinoid/NETs to as many people as possible over an 18-24 hour period.
But I am nervous about Monday’s event…
We say that doctors can’t detect what they don’t suspect–but equally, people can’t support what they don’t know exists. November 10 is the day we try, globally, to change that deadly calculus.
The social mediathon on Monday is an 18 hour obstacle course one enters as host not knowing whether an audience will show up or not.
What follows is a plan for marketing carcinoid/NETs to the general public. But it is only a broad outline of the twelve major issues we need to address. The plan suggests specific actions, but does not advocate a specific timetable for bringing those things about. We need, first, to reach a broad consensus about whether these ideas make sense and form a basis for a reasonable plan.
Now it is up to the other folks in this community…
The next step in the process is a period for people to comment on the plan and the ideas it espouses. My plan is to step back until early December to let that happen. Depending on responses, we can then begin to talk about priorities and timelines for making what is here–or a modified form of it–reality.
A plan for an alliance
1. Create an alliance of groups willing to work together on greater public awareness and fundraising for research.
This alliance will need a name that unites each group or chapter while allowing each group to maintain its local identity. I suggest Allies Against NET Cancer or Allies Against CarciNETs.
The alliance will need to either adopt the Walking with Jane logo–minus the verbal copy–or create a new logo that creates a similar image for the general public about the seriousness of the disease and the seriousness of our purpose.
Members of the group will create content for both websites and local and national media aimed at promoting knowledge of NET carcinoid/NETs and raising research funds for it.
Members will freely share and distribute materials they develop to other members of the alliance for use or adaptation to local markets.
Each local group will adopt a local NET Cancer Program to promote and organize funding for.
Local groups without a local program to support will work with the local National Cancer Center to create and support such a group.
Members of the alliance will continue whatever patient outreach efforts they have in place and are free to expand their offerings as they see fit.
Members may display the Allies against CarciNETS/NET Cancer Logo on their websites and other materials in addition to their own logos.
A brand plan
2. Create or adopt a logo as a brand symbol for carcinoid/NETs for display with the general public.
The logo should demonstrate a strong human connection to the disease.
The logo should demonstrate a seriousness of purpose and commitment.
The logo should make a strong visual statement that will appeal to a general audience without previous knowledge of carcinoid/NETs.
A story plan
3. Develop methods of telling the carcinoid/NETs story to the general public.
Develop contacts in local, regional and national media among reporters, editors, and news directors.
Call local newspapers, television, and radio stations with ideas for carcinoid/NETs stories. These stories can include local events, local doctors, local patients, and local caregivers dealing with the disease. They can also include local fundraisers or other events aimed at getting the word out.
Attend local and regional press gatherings. Consider a booth at a regional press association conference.
Offer to do a monthly interview or program on local radio on NETs–or on cancer in general.
Write letters to the editor around specific dates or events–for example NET Cancer Awareness Day
Create your own local Social Mediathon on November 10.
Create and distribute 30 second Public Service Announcements on Facebook and other social media.
A naming plan
4. Agree on a single, easily remembered name for carcinoid/NETs and align all general materials and releases with that name.
Externally, we need to end the confusion our multiple names for carcinoid/NETs creates for the general public.
Internally, we may need to keep the multiple names so that we know what specific symptoms and syndromes we are talking about.
A standalone plan
5. Develop local, regional, and, eventually, national standalone events to raise funds and awareness for carcinoid/NETs.
Golf tournaments, walks, runs and other athletic events can raise substantial amounts of money but we may be reaching a saturation point with some of these.
Dinners, dances, comedy nights, concerts and receptions can attract donors–and create mailing lists.
Direct mail campaigns based on holiday card lists and locally generated lists can both tell the NETs story and raise money with smaller physical efforts than larger events.
Join the Social Mediathon on November 10 each year by providing content or making comments online–or set up your own using the materials we create for the Walking with Jane event, supplemented with your own materials.
Create local and regional events aimed at leveraging NET Cancer Awareness Day proclamations.
A piggyback plan
6. Continue to piggyback on larger events.
Every marathon could have a carcinoid/NETs themed team.
Piggyback on local Relays for Life, although doing so will not increase funding for carcinoid/NETs in the near-term.
Continue to find other events to piggyback on.
A non-traditional plan
7. Develop non-traditional venues for raising awareness and funds
Develop and exploit relationships with regional sports teams. We’ve all seen what breast cancer awareness gets from the NFL. Locally, the Jimmy Fund gets a huge boost from its association with the Boston Red Sox. Support from even minor league teams could make a substantial difference.
Booths at craft fairs provide an opportunity to both distribute literature and raise money by selling crafts designed and produced by local patients and caregivers.
Sites at multi-family yard sales and flea markets provide the same opportunity without the need for access to crafty creators.
Relay for Life creates an opportunity to get the word out simply by fielding a team at the local event. Most events encourage teams to adopt a specific form of cancer to educate people about.
Create or join a video or audio podcast.
Write and send out a monthly press release for local media on the latest news on carcinoid/NETs, including links to medical and research information as well as local, regional and national events.
Develop contacts at regional cancer centers–especially those with NET cancer programs. They may have additional ideas.
The date currently is so close to Breast Cancer Awareness Month that both media and the public are frequently burned out on cancer awareness stories.
Much of the US is under threat of inclement weather for outdoor events.
June, August, and September offer better weather and fewer conflicts with other groups.
A spokesperson plan
9. We need to develop spokespeople from the carcinoid/NETs community as it currently exists. We should not wait for a celebrity savior.
Given that so much of what we need to do is at the grassroots level, local spokespeople will be more effective than a nationally recognized celebrity.
Celebrities are not beating down the door to talk about carcinoid/NETs.
Celebrities come into a cause with their own agenda that may not be ours.
We need to develop means of helping people become better writers and speakers, however, for this to really work.
A publicity plan
10. We should embrace publicity stunts only to the degree that they truly move all our objectives forward.
We need to learn the lessons of the Ice Bucket Challenge.
We want all our events to both increase knowledge and awareness while raising funds for the cause.
Given a choice between a one-time influx of cash and spreading knowledge for the long-term, we should always choose spreading knowledge.
Sustainable growth matters.
A social media plan
11. We need to develop a strong social media presence on all social media platforms, leveraging the strengths of each as effectively as possible.
Websites provide the opportunity for in-depth reporting and connections to resources.
Facebook provides space for conversation and connections to more detailed material.
Google+ largely duplicates what Facebook does but sometimes has a different, sometimes more reachable audience.
Twitter is essentially a headline service that can link to images and other, more detailed content.
Pinterest needs further exploration and exploitation. It seems to be growing more quickly than other social media and may represent the next area we need to have a stronger presence on.
Tumblr provides website space for those with limited budgets who are willing to deal with its limitations. It has a strong following the other sites do not seem to reach.
We need to remain aware of the visual nature of most social media and do a better job of using that fact.
Social media are a constantly evolving set of platforms we need to watch carefully and stay aware of.
A family plan
12. We need to work to create a strongly visual and familial image that the general public will want to become a part of.
We need to find ways to reward those who participate in our events in ways that will make them want to return to those events in future.
T-shirts, hats, and pins.
Warm greetings, handshakes and hugs.
Timely thank you notes and invitations.
We need to listen carefully to what patients and non-patients are saying and act on what they need from us.
We need to be honest, kind, and loving toward each other at all times–even when we strongly disagree with each other.
Tuning the plan
I began working on this plan back in June following a conversation at a Caring for Carcinoid Foundation event in May. The first 12 parts of the series leading to this post are designed to show the evolution of my thinking on the subject and provide detailed support for the ideas presented in this draft plan. A number of people have commented along the way, both here and elsewhere. Their thoughts have also found their way into what is here. They have my sincere thanks for sharing their ideas.
The next step in the process is a period for people to comment…
Now it is up to the other folks in this community to weigh in on what I have proposed here.
(Editor’s Note: This is the thirteenth–and last–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. I look forward to reading your comments.)
First, create a plan, then implement the plan, then evaluate the plan and change the plan, my grandfather used to say to me. This draft plan is my idea of how we get carcinoid/NETs higher in the public consciousness. What would you add to–or delete from–this plan?
Planning and goal setting are in my blood. Three of my grandparents started life as farmers. The fourth was a school teacher. All of them knew that failing to plan is a plan for failure–and it is a lesson they drilled into their children and grandchildren until we all became planners no matter what line of business we went into.
…local and regional chapters that had extraordinary independence.
Every plan requires an understanding of what already exists. It requires we look as coldly as possible at the strengths and weaknesses that exist in the current situation. Over the last three years, part of my work has been to look at what we are doing against carcinoid/NETs with a critical eye–and over the last several weeks in this series I’ve outlined some of what I have seen.
Knowing the ground
Some might say I’ve been fairly critical of what we have been doing. I am sure that rankles some who have worked in this particular vineyard a lot longer than I have. It is not that I am unaware of what others have accomplished to this point in the face of the great difficulties we confront. In the forefront of my mind is always the simple fact that for 40 years carcinoid/NETs patients suffered from neglect that was anything but benign. When I look at what the Carcinoid Cancer Foundation alone accomplished with virtually no resources when compared to the better funded cancers, I am astounded.
…failing to plan is a plan for failure…
There are things we are doing remarkably well in the fight against carcinoid/NETs. We have an extraordinary number of high quality online and offline support groups for both patients and caregivers, a number of caring and high quality physicians and researchers, and a community of small foundations working together to improve the situation for everyone.
Plan objectives
What we can do, however, is limited by the resources we have to work with. So long as our focus remains largely within the carcinoid/NETs community alone, we are not going to have the financial resources we need if we are going to find a cure. To do that, we need to reach the population that has never heard of carcinoid/NETs–and never will if we do not develop–and implement–a plan to get their attention. The truth is we do a very good job of talking among ourselves–but a very poor job of moving those outside our specific group.
…I’ve been fairly critical of what we have been doing.
While some carcinoid/NETs patients are well off, most are not. They don’t have much in the way of uncommitted money they can afford to donate to finding a cure. This is not a cheap disease to treat. And unlike many cancers, it does not kill or cure quickly. It is an illness that can leave even upper-middle class patients bankrupt long before it is done. If we are to find the resources we need to develop a cure, we must find other sources of income beyond carcinoid/NETs patients and their caregivers.
Plan priorities
Patient support is extremely important and it needs to remain a priority. Educating primary care doctors about the disease so that they know to order the right tests at the right time and reach out for support when they need it, also needs to remain a priority. We are doing a good job in these areas–but that job is far from done. Less than 10 percent of carcinoid/NETs patients are in dedicated support groups. Doctors and nurses who have not heard of the disease remain the rule rather than the exception. The critical shortage of specialists and dedicated carcinoid/NETs programs leaves too many patients without easy access to high quality treatment.
…it does not kill or cure quickly.
The good news is we have many people focused on the first two issues. The last of those three needs an equal commitment. But all require resources we do not currently have. We need to grow awareness in the general population in order to create those resources.
Plan obstacles
That effort begins with crafting images and messages that will move the general public and get them to understand the seriousness of what we, as a community, face. While things like Netty play well among patients as gallows humor, they do not present the image we need if we are going to sell the general public on the seriousness of what we face. They play into the “but-you-don’t-look-sick” narrative too many patients have experienced. “If you can joke about it, it can’t really be that bad,” is not a message we want to send.
Patient support is extremely important…
Periodically, I hear people urging a “manage the disease” approach. But this diabetes analogy is not helpful, either. While many of us would settle, perhaps, for chronic-but-manageable-disease status as an improvement over what we have now, perpetual bloating and diarrhea in no way resemble low blood sugar. I have had several close friends with juvenile diabetes and I know it is no joke–but I don’t believe any of them would trade their diabetes for carcinoid/NETs–even a carcinoid/NETs as well controlled as their diabetes. We need the general public to understand we need a cure, not a management plan.
Plan participants
We need patients to be upfront about what dealing with carcinoid/NETs is about. We need to come out of the closet and talk about the symptoms of the disease: the diarrhea, the bloating, the gas, the pain, the flushing and the fainting and the insomnia–and all the things that go with those symptoms. And we need patients to do so, not in the safety of a support group, but in front of the general public. That will require Betty Ford-like courage, but it needs to be done.
…crafting images and messages that will move the general public…
And we cannot wait for a celebrity to emerge to do that job. Steve Jobs and Dave Thomas had the opportunity to play that role but decided against it for the same reason many patients continue to do so. It is not just that announcing one has an eventually fatal disease will have an impact on stock prices and personal wealth; it is also that the symptoms of the disease have all kinds of potential for embarrassment.
Finding funds
We need to create sustainable research incomes for the programs we have now that are independent of government and pharmaceutical company support. I have seen enough of how both those systems work to understand that neither is willing to support efforts that are not a virtual lock-down success from the start. That means basic research is rarely funded by either one. With the current budget situation in Washington and the demand by investors on Wall Street for immediate profits, that is not likely to change any time soon. Indeed, it seems likely things will get worse on this front before they get better.
We need to come out of the closet…
We need, then, to create a vehicle–or vehicles–that looks outward more than inward–that will carry our message to the larger public. Its construction and thinking likely needs to be somewhat different from the things we have currently in place that are aimed largely at those already in the carcinoid/NETs tent because they are in some way dealing with the disease.
Plan from history
My instinct says there are things we can learn from what the Cystic Fibrosis Foundation, Komen and similar group have done. But I think the best model may be what happened with the American Cancer Society in the 1950s and 1960s. The perception is it was a strong, centrally run organization–and there is some truth to that. But it was also an organization divided into local and regional chapters that had extraordinary independence. It was far more grassroots in its structure than it at first appears.
…basic research is rarely funded by either one.
Tomorrow, I’ll outline what I think our vehicle should look like and what kinds of things it needs to do in order to attract broad and ongoing public support for killing carcinoid/NETs.
(Editor’s Note: This is the twelfth 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.)
Every victory begins with an examination of the terrain and the development of a plan. The plan may change as the situation evolves, but the initial plan is still important.
Dear friends,
I just got off the phone with state senator Mike Rodrigues office. The governor has signed a proclamation making November NET Cancer Awareness Month in the Commonwealth of Massachusetts. Mike will present the proclamation at the Chowder and Clam Cakes fundraiser Walking with Jane is doing tomorrow night in Westport. Mike’s office has done the legwork on this the last two years.
We tried to get a formal presentation from the governor in Boston but were told they don’t do that kind of thing. We will try to find an appropriate venue to display and present the proclamation in Boston sometime in November with NET cancer patients, caregivers and researchers, as well as members of the legislative cancer caucus and other interested parties. If those of you in Boston have thoughts, let me know.
Since the founding of NET Cancer Awareness Day, Massachusetts has always made November NET Cancer Awareness Month, initially through the actions of Pamela ter Gast, who is a NET cancer patient at the Dana-Farber Cancer Institute.
This post has to be brief as I’m off to try to arrange press coverage for tomorrow night.
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.)
We build family one person at a time, one group at a time, one story at a time.
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.)
A non-blood family grows through shared experiences and caring about each other’s issues.
I’ll be the first to admit that I don’t understand social media very well. I’ve studied it for the better part of three years. I’ve read the papers, listened to the experts, embraced–at times–the shorter is better philosophy. When people at the Jimmy Fund Walk told me people who raise the most money use social media, I jumped on board.
It’s not much, but it’s all I have today.
I watched where the money came from for my Jimmy Fund Walk. I watched where the money came from for our Relay for Life team. What social media created was insignificant. Yes, it brought in a few dollars we might not have gotten otherwise. But the amount was not worth the time and effort compared to a simple fundraising letter sent out by direct mail.
Certainly not me
Clearly, I’m doing some things wrong. I don’t put a picture or graphic on every post. My posts are too long or too frequent. They don’t say the right kinds of things. I need more pictures of kittens or babies or puppies. Maybe the people who get my posts are the wrong kind of people.
What social media created was insignificant.
Or maybe, what we think we know about social media is entirely wrong. It took marketers about 200 years to figure out how to create newspaper advertising that worked with any consistency and about 40 years to really get television commercials to work. I’m not entirely convinced we’ve figured out radio even after 100 years. Social media, things like Facebook and Twitter and Pinterest, is still in its infancy–and while we understand marketing better than when TV started, it is still terra incognito.
A medium in its infancy
People have worked for 20 years to try to sell things using the Internet. Some folks have begun to succeed–but only in the last handful of years have a small number of companies begun to show investors any return on their money in terms of actual profits. Most are seeing profits only from the increase in stock prices.
…it is still terra incognito.
Someone asked this week if they could advertise on walkingwithjane.org. They offered us $15-$25 for every “guest article” we let them place on our page. They also offered to pay us for “banner ads,” though we didn’t get to what they would pay us for those. They sent me a couple of “sample articles” and a link to the kinds of “banner ads” they would use.
What the pros are doing is uninspiring
I actually seriously entertained the notion for a few minutes. Then I looked at the sample articles. They had told me the samples would not be good for our site and said they would write things our readers would find useful. But the writing was pathetic–and demonstrated pretty conclusively they would not be able to handle the subject of carcinoid/NETs in a way that would be useful.
Someone asked this week if they could advertise on walkingwithjane.org.
The site they were using for their samples had endless pop-up ads that jumped annoyingly into the midst of the text I was trying to get through. The article clearly existed as a way to get people to look at their pop-ups. I was not amused.
The scent of desperation
I tell this story not to be critical of the company but to demonstrate how badly people are failing at marketing to audiences in social media. This website, walkingwithjane.org, generates about 40 views a day in a good month. We’ll average a little over 1000 views a month for the current calendar year.
The site they were using for their samples had endless pop-up ads…
Our Walking with Jane Faceboook page reaches, on a good week, about 800 people. But less than 10 percent of those “reached” have any actual interaction with the posts and links we put there. We have 135 followers on twitter. Only five of them regularly interact with what we post there. Our tumblr following is even smaller and it is rare anyone interacts with it. We won’t discuss Google+, which makes our tumblr activity look dynamic.
The truth about social media
And yet, someone is willing to pay us $15 to place “guest articles” on our site, even promising to make sure they deal with carcinoid/NETs despite the fact those articles will likely be of little use to them beyond walkingwithjane.org. Think, for a moment, about the level of desperation that fact evidences.
We have 135 followers on twitter.
Here is the dirty little secret of social media: Facebook alone claims to have over one billion subscribers. But even the most popular item I have ever posted there has never been seen by more than 1500 people except on the two occasions I decided to pay to boost the post. And boosting the post only means you get your post into more people’s news feeds. It does not mean they actually read it–or even really registered it was there.
The reality of the niche
Walking with Jane’s Facebook page has 760 likes. That does not mean that what we post there is seen by 760 people though. Yesterday, for example, I put out a request for photos and stories for our November NET Cancer Awareness Campaign. I shared it with five other groups claiming memberships of over 2000 people combined–on top of those who like the Walking with Jane page. So far, 348 have “seen” that post, but only 25 have responded in any way. And that post was three times more successful than what we average for original content.
Here is the dirty little secret of social media…
When we look at the Internet in general, and social media in particular, we see a huge potential audience. But that audience is divided into tiny niches both by their interests and by the people running those media. Yes, occasionally something goes viral and gains a much larger part of the potential audience. But that is rare and almost never involves something not related to grumpy cats, puppies, the antics of small children, or videos of people in compromising positions.
Looking for answers
The problem we face, then, in marketing carcinoid/NETs through social media, is substantial. We need to figure out how we can consistently break out of our niche of NET cancer patients and into the mainstream. Honestly, I have no idea how to do that. Worse, I’m not sure anyone else does either.
…we see a huge potential audience.
That doesn’t mean we give up. President Franklin D. Roosevelt said during the depression that the government had to try everything it could think of to put people back to work. If something worked, keep doing it. If something didn’t, try something else. That’s what we need to do here.
Something to try
And I do have an idea we can try. If each of us simply shared everything we produce through all the venues we are connected to, maybe we would collectively reach a big enough group to gain some traction. I know that the more groups and pages I can share an item on the more broadly the various social media share it beyond those groups. It’s not much, but it’s all I have today.
(Editor’s Note: This is the ninth 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 my next post in the series, we’ll look at why creating a family feeling rather than a group matters.)
We’d like to believe that social media is the answer to our carcinoid/NETs marketing problem. But the way social media works means it can only be a part–and perhaps only a small part–of a comprehensive plan with many facets.
I want to launch a new NET Cancer awareness campaign on the various Walking with Jane sites–and on any other site that wants to use the materials–using multiple videos and posts during the month of November. To do that, I need your faces and/or your voices, carcinoid/NETs patients.
Written stories should be at least 300 words…
The campaign will be called Faces of Carcinoid/NETs (or some variation of the NET cancer names). For the first video or two, I need just pictures of people with NETs. Each video will contain 34 faces and open with a screen that says, “These are the faces of NET cancer.” Then the 34 pictures will flash on the screen in silence at about one second per face. The last screen will say, “Thirty-four new faces will join them today.”
Putting real faces on our disease
To create that video, I need permission from 34 people with NETs to let me use their likeness in the video. If you are willing, send me a note expressly giving me permission to do so with the picture you want me to use to walkingwithjane@gmail.com.
I need your faces and/or your voices…
The second set of videos will require more on your part. Make a 25 second video of yourself talking about your personal experience with carcinoid/NETs. I’ll put the same opening on it I use with the other video, but the close will say, “November 10 is NET Cancer Awareness Day.” After November 10, the new videos will say “November is NET Cancer Awareness Month in Massachusetts.” Again, send these to walkingwithjane@gmail.com with explicit permission to use them in this campaign.
Where the faces will go
I’d like to have at least 30 videos for this campaign for the month of November.
Make a 25 second video of yourself talking…
The videos will be posted on Facebook, Google+, our Walking with Jane Channel on YouTube and anywhere else I can think of, including radio and TV. Links will also be posted on walkingwithjane.org. I will also offer them to Caring for Carcinoid, the Carcinoid Cancer Foundation, the Healing NET Foundation, the NET Alliance, NANETs, the Dana-Farber Cancer Institute, Ochsner–and anyone else who asks for them and has a legitimate use for them in raising money for, and awareness of, NET cancer.
Thirty full stories for this site
Finally, I would like to run 30 different personal NET cancer stories on walkingwithjane.org during the month of November. If you would like to write about your personal experience with NET cancer for a broader audience, please contact me at walkingwithjane@gmail.com. Stories should be at least 300 words and less than 1200. I will edit your writing but will send you a copy before publication for you to approve.
I’d like to have at least 30 videos for this campaign…
These items will also be shared with any organization that is interested in joining the campaign.
If you have questions, leave a comment below or send me a note at walkingwithjane@gmail.com.
We’re looking for faces that represent carcinoid/NETs patients for a 30 day NET Cancer Awareness Campaign in November. You can help.
ALS got a huge boost from this summer’s “Ice Bucket Challenge.” The event went viral in ways no one anticipated and raised a boatload of money with minimal effort from ALS organizers. For a few weeks, ALS was on everyone’s lips–or so it seemed. As publicity stunts go, it was a huge success–at least for the summer.
…I am leery of publicity stunts in general…
As a young man, I experienced the pet rock craze. Retailers I knew could not keep them on the shelves. I remember a game called Simon. It, too, flew out the door faster than we could restock them. And there was Trivial Pursuit–bigger and with greater longevity than either the Pet Rock or Simon.
The lessons of history
All three, for a short time, made their manufacturers a significant amount of money. Ask the average 20 year-old about any of them and you will be met with a blank stare. Describe the Pet Rock to them–it was a generic rock in a small box with a set of care instructions–and you will be met with a priceless look of incredulity and some variation on the phrase, “People paid money for this?”
Retailers I knew could not keep them on the shelves.
Ask average participants in this year’s “Ice Bucket Challenge” what they know about ALS and about all they will be able to tell you is that they did the “Challenge” to raise awareness about the disease. They won’t know the symptoms or how it affects the daily lives of those it afflicts or even how many Americans have it. Five years from now, most will remember having poured the ice-laced water over their heads but not even the initials of the disease they did it for.
What people remember
The problem with publicity stunts is that in the long-term people remember the stunt but not what it was designed to draw attention to. That’s fine when you are marketing a product with a short shelf-life. But it’s not so good if you are trying to market awareness of a disease.
They won’t know the symptoms…
For carcinoid/NETs or ALS, a publicity stunt is only good to the extent it produces a longterm change in the prospects for a cure. If a significant percentage of those who iced themselves this summer become regular donors to ALS support and research, then this summer’s exercise will prove good for those who suffer from the disease. But if a significant number come to view the disease as the punchline to a joke or, worse, forget about the disease entirely when the next fad goes viral, then this summer’s activities may do more harm than good.
The value of publicity stunts
Of course any group of patients of one of the ignored diseases would be thrilled by that fleeting moment of public awareness. We all are convinced that viral moment will do for us what it has rarely done for anyone else. We would manage the moment better–our disease is more worthy, affects more people, is more hideous.
…people remember the stunt…
I’m not saying publicity stunts have no place in a marketing effort. But they can only be one element in a sustainable plan. The effort involved in them has to be minimal on the part of organizers–and there has to be a plan in place to take advantage of the attention they can bring if they break out in a large way.
Harder than it looks
If we want to successfully market awareness and constructive concern about carcinoid/NETs in a sustainable way, we can’t rely on the accident of a passing fad–no matter how good it may make us feel in the moments it is happening. Nor can we afford to think that we are one good publicity stunt away from having the awareness of the disease we all crave.
…they can only be one element in a sustainable plan.
But getting that attention is far more difficult than it looks. Crafting something that will reliably go viral is not easy. Last year, for example, a group of us tried to get everyone on Facebook to change their profile picture to a zebra ribbon for NET Cancer Day. Less than ten percent of those who Like the Walking with Jane Facebook page actually did as we asked. Others had similar experiences.
Hard to maintain
And even major cancers have difficulty maintaining the momentum a successful publicity stunt can provide. Breast Cancer Awareness Month, despite the support of the NFL and hundreds of companies, large and small, is seeing some fade from where the event was 2-3 years ago when my local newspaper was running pink front pages every day for a month and one could not walk through a grocery store without engaging with pink items in every aisle.
Crafting something that will reliably go viral is not easy.
Social media, however, tempts us to think and act otherwise. It provides us with a huge audience that is seemingly a single post away from becoming active on our behalf. The question is, what kind of attention do we want and how do we go about getting it?
Relay as publicity stunt
Probably they single most successful publicity stunt–it is the biggest single cancer fundraiser in the world–is the American Cancer Society’sRelay for Life. For more than a quarter of a century it has raised awareness and funds for ACS programs in research and patient support. It is a brilliantly conceived event that shows what the real potential of such efforts can be with careful planning and support.
…engaging with pink items in every aisle.
Dr. Gordy Klatt‘s initial plan was simply to run–by himself–around a track for 24 hours. The next year, he offered to let people run with him for a specific pledge amount. The event evolved from there and continues to do so today and–while it faces some problems–it is a model for publicity efforts that do more good than harm.
Grassroots connections
One of the keys to its success is a dedication to grassroots efforts. Every event has a core of local volunteers that has a unique understanding of its local audience and what it will support. The problems it faces are largely brought about by the efforts of the national organization to take greater control over what is going on at the local level.
It is a brilliantly conceived event…
Given the history of ACS in the 1950s, when it was, in many ways, a classic grassroots organization, that move is well-coated in irony. But there has always been a creative tension between the national office and the local groups it relies on. In some senses, every Relay is a separate organization that is allied to the national goal of eradicating cancer. The regional and national headquarters–at their best–try to co-ordinate and support those efforts with expertise and materials.
Building a sustainable future
My point is, though, that ACS and Relay can serve as a model–albeit an imperfect one–for building a sustainable effort against any disease. They make good use of the publicity stunts they use within the larger context of raising money for and awareness about cancer generally.
Every event has a core of local volunteers…
I am not suggesting, however, that carcinoid/NETs needs to launch a collection of new Relays. Frankly, the walk and run markets are pretty well saturated. Every weekend has five or 10K walks or runs for a wide range of causes. Breast Cancer and MS even have multiple day events in effort to distinguish themselves from shorter distances.
The role of publicity stunts
But while I am leery of publicity stunts in general–I am convinced that the right kind of event with the right kind sustainable efforts in place behind it can be a useful part of the marketing puzzle. But it is only part of the plan–and not necessarily a very big part.
(Editor’s Note: This is the eighth 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 my next post in the series, we’ll look at the use of social media in a marketing campaign.)
Publicity stunts often don’t have the impact we would like. If the effort produces results that cannot be sustained for an extended period of time, then no matter how big the initial wave, the stunt can prove counterproductive. Shaving my head did not have a sustained impact–or even a very big one–at the time I did it.
I received a note elsewhere this morning from someone who had lost her brother to cancer, but felt it was the treatment that killed him, not the cancer. She questioned whether clinical trials did anything beyond making the medical establishment wealthy–and wasn’t that a cause for concern?
I have a friend who has the same cancer Jane did.
She also felt that the number of cases of cancer was on the rise and that, despite all the trials and effort, we had made few strides toward finding a cure–that, if anything, we were worse off today than we had been in the past.
Three levels of trials
Trials are experiments. By their nature, they involve some risk. This is why they are not generally offered to people until after they have undergone the standard treatments–if they exist–and have not been cured.
She had lost her brother to cancer…
There are three levels of trials before a drug is approved for use in the US. Phase I trials are very small and are done in part to demonstrate that the drug does less harm than the disease. Phase II trials are slightly larger and are about trying to find out if the treatment works. Phase III trials are the final step before going to the FDA for final approval. They exist to demonstrate the treatment works in a significant number of cases and to find out what the common side effects are.
Impact of trials
My sister is alive today because she was able to get into a drug trial for her aggressive, late Stage 3 breast cancer more than 15 years ago. My sister-in-law benefitted from those experiments when she was diagnosed with an equally aggressive breast cancer five years ago. She, too, is still alive and cancer-free. Today, there are forms of breast cancer we can cure because people took those risks; there is a form of lung cancer we can cure because some people took those risks.
Trials are experiments.
Childhood leukemia in the 1940s was nearly always fatal. Even in 1980, 80 percent of those diagnosed with it died. Today, close to 90 percent go on to live full and productive lives. That change is a direct result of people going through trials–not all of which worked, unfortunately.
Persistent problems
The number of cancer cases does seem to be increasing. Part of that increase is that we are getting better at diagnosing some forms of cancer. Part of that is the increasing number of toxins we pump into the environment that mutate our DNA. Sometimes, a particular treatment does lead to new cancer some years down the line–but that appears to be relatively rare.
Childhood leukemia in the 1940s was nearly always fatal.
When I graduated from high school, if you got a cancer diagnosis, about all you could do was get your affairs in order and prepare to die. Sometimes surgery, radiation or chemo worked–but it was relatively rare. Today, more than 60 percent of those diagnosed are still going concerns five years or more later. That is a direct result of people being willing to take part in trials–even though those trials were sometimes painful and often carried their own risks.
The truth about progress
When Jane was in the hospital for her heart surgery, the woman in the next room was there for the same operation. The drugs used in the mid ’90s had eventually destroyed the valves in the right side of her heart. In 2010, they replaced those valves. Her recovery from that operation was still uncertain, but without that therapy, she would not have had those 15 good years–not seen her children graduate from high school, not seen them marry, not have gotten to hold her grandchildren in her arms.
Sometimes surgery, radiation or chemo worked…
I’m sorry for what happened with my correspondent’s brother. I know what chemo’s immediate aftermath can look like–and I would wish that on no one. But his heroism is part of why we can say to many patients today there is hope for them.
The truth about trials
Not every trial is successful–and not every successful trial results in a cure for every patient. Every cancer, it turns out, is genetically different–and that complicates the search for cures in ways no one could imagine even 20 years ago. What works on one form of lung cancer doesn’t work at all on other forms. What works on one form of breast cancer doesn’t work well–or at all–on others. And what works on the breast cancers we can cure, generally doesn’t work at all on other forms of cancer.
I’m sorry for what happened with her brother.
Jane died 47 months and three days ago. We knew from fairly early on that the only hope she had was entirely experimental and would involve–potentially–four major operations over a two-year period–one of which had never been done on a carcinoid patient. No one has ever beaten her form of cancer–but she was determined she would be the first.
Taking risks
Jane was a woman of both science and compassion. She knew she was facing long odds, but if her efforts could save even one other life, she was willing to endure whatever she needed to. In the event, she never came out of the hospital after her heart operation–not because the heart operation failed but because of complications no one saw coming. The result was that the medical community has now changed the protocols for carcinoid patients undergoing heart surgery. Her doctors told me a year ago that what they learned from Jane’s case had saved at least three lives in their operations already–and who knows how many more elsewhere.
…not every successful trial results in a cure for every patient.
The liver ablation that was next on the docket is now being used frequently on patients with her form of cancer because others were willing to take the risk to pursue that treatment. It is not a cure–by any means–but it buys patients time and eases the horrific symptoms of carcinoid/NETs.
The value of trials
Medicine offers no miracle cures. Everything we learn comes from years of research–and from patients willing to take the risk of being human guinea pigs on the front lines of the war on disease. In broad terms, the results are staggering: in our lifetime, polio has gone from an annual terror to a disease virtually unheard of in the US; small pox is dead on a global scale; life expectancy in the US has increased by nearly 20 years; globally, we have a handle on AIDS; and cancer, while still a deadly killer, is no longer the death sentence it nearly always was in every case.
She was a woman of both science and compassion.
We have a long way to go in the fight against cancer. While we have cures for some, there are too many we don’t have cures for–or even a good idea of how to proceed.
There are moral problems…
And there are problems with unscrupulous drug companies and researchers more concerned with profits than with human beings and the diseases they face. And, yes, that concerns me.
Medicine offers no miracle cures.
But every time I meet someone with a currently incurable cancer–hear the story of what they are going through, and what their families are going through–I know that we have to keep trying: keep researching, keep learning, keep experimenting, keep doing the trials and keep taking the risks.
What heroes fight for
I have a friend who has the same cancer Jane did. She has two little boys and a husband she loves and who love her. She has enormous courage. And she is just one of tens of thousands who faces what Jane faced every day.
…I know that we have to keep trying…
That will not change except through the work of doctors and researchers and patients like Jane who are willing to take the risks so that others can live full lives.
Every patient who takes part in medical trials is taking a risk. What Jane–and all the others like her who sail into uncharted medical waters–did was heroic.
