Category Archives: Marketing NETs

Christmas Letter from Walking with Jane

Boston Marathon Jimmy Fund Walk, Grief, Marketing NETs, NET Cancer Awareness Day/Month, NETwalkers Alliance

A too familiar stair

Dante finds himself contemplating life and loss at the beginning of the Divine Comedy. A bit more than two weeks ago, I found myself in a similar space. I had started my own epic, a book on grief that will eventually, if I can bring myself to finish it, help to fund both a cure for the carcinoid/NETs that took my wife from me and an online grief group that has helped me try to survive that loss. I have the first five chapters drafted–but each has exacted a steep emotional price as I journey again through the last months of Jane’s life and the early days following it.

…have a wonderful holiday…

Those emotions have been further exacerbated and complicated by the events of this past year. In August, I lost my father to a massive stroke. He was dead before my plane reached Seattle. Like me, he was a widower. My mother died of Alzheimer’s barely 10 months before Jane’s fight with NET cancer led to her death. My father and I spent that first Christmas–and all the Christmases since–together. We talked about my mother and Jane and about what we both were feeling. It was a peculiar thing to hear my father talk about how he felt. He was not one easily given to sharing his feelings.

A year of death and disease

This Christmas, I will not travel out west for the holidays. My father-in-law was diagnosed just six weeks ago with prostate cancer that has already metastasized to his bones. He will return home on Christmas Eve from a month in rehab and treatment. I cannot leave him and his surviving daughter to face this Christmas–perhaps his last–alone. My brothers and sisters will have each other this Christmas. My in-laws need me here more than I need to be in the west.

He was dead before my plane reached Seattle.

But I will miss those hours with my father. There would be much for us to mull over. Just days before his death, one of my nieces died from a disease she had fought since her teens. I can find no reason in it. Early in the year, I lost one of my oldest friends to breast cancer. Another lost her mother to Parkinson’s. Three friends lost their father to colon cancer. Another friend’s wife was diagnosed with breast cancer and is in treatment. My cousin spent much of the first half of the year fighting uterine cancer. In fact, not a month has gone by this year without either a cancer diagnosis or a death.

Intimations of mortality

Thirteen days ago was the fourth anniversary of Jane’s death. The lead-in to that date was more difficult than I expected. There were days it felt as though she had just died. Part of that was working on the book. But a major part of it was how empty everything seems without her. I can go to a play, listen to music, watch a film, bake bread–do nearly anything–but there is no Jane to share in the small victories or pleasures of life. It is all dust and ashes in my soul. I am tired.

I will miss those hours with my father.

I am reminded of mortality at every turn. Even my own body reminds me of that, though not so horribly. I have had gum surgery on every quadrant of my mouth this year and face more surgery there in the year ahead. Just weeks before the Boston Marathon Jimmy Fund Walk my right knee, which has often given me twinges, gave me pain serious enough that I cut my distance to 13.1 miles instead of the usual 26.2. I’ve only begun walking on it seriously within the last two weeks and, while it still gives me a twinge once in a while, it is healing nicely. Unfortunately, the months of enforced inactivity have put 12 pounds on that I had hoped I’d said good-bye to permanently.

While much is taken, much remains

But I would not have anyone believe that everything has gone darkly this year. Walking with Jane has begun to gather the momentum necessary for flight at long last. Since April, this website has been viewed over 1000 times a month every month except one–and it came close. And every one of those months has been the best of its kind ever in terms of traffic. In November, we had our first 3000 view month.

I am reminded of mortality at every turn.

In April, our Marathon Walk team combined with Kulke’s Krew to form one large team. When the dust settled in September, Caring for Carcinoid/Walking with Jane, Hank and Anne had 48 walkers, eight of whom achieved Pacesetter status. Total, we raised nearly $70,000 for NET cancer research at the Dana-Farber Cancer Institute. That total put us in the top 20 teams–and eclipsed the total of our separate teams the year before by about $10,000. I personally raised nearly $17,000–a personal best for me, as well, that should put me in the top 20 for individuals.

Raising the bar

Our goals for that event for next year are even bigger–and walk organizers at the Jimmy Fund are doing all they can to help us. They have granted us permission to use the Jimmy Fund Walk logos on a stand-alone Facebook Page–the first of its kind to be allowed to do so–for our renamed NETwalkers Alliance team, and are arranging for us to meet with some of the more successful longterm teams to learn from them what they have done to build and maintain success. We will be the official team of the Program in Neuroendocrine and Carcinoid Tumors at DFCI. Both Drs. Matt Kulke and Jennifer Chan, as well as members of the research and support teams for the program walked with us this year.

That total put us in the top 20 teams…

I was reappointed to the Visiting Committee for Gastrointestinal Cancers at DFCI this year. We heard from former NBC News anchor Tom Brokaw at this year’s dinner. Brokaw was treated for multiple myeloma last year and, while he looks frail still from the treatment, still has that signature voice, as well as the ability to see the larger patterns in world events. He spoke eloquently for about 20 minutes without a script or even notes, weaving his cancer journey into world events and new and old scientific discoveries.

Promising discoveries

We also got a look at the meeting at some truly promising developments both on the general cancer and NET cancer fronts. Two items stood out in particular. The first is the discovery of some markers that may eventually make detecting pancreatic cancer earlier possible. The second was progress in the use of immunotherapy on cancer.

Our goals for that event for next year are even bigger…

The second is of particular importance to NET cancer patients as at least one Phase III trial of immunotherapy is scheduled to start in 2015 for carcinoid/NETs. That trial is funded by the Caring for Carcinoid Foundation, which has launched a million dollar matching program for that effort. If you want to make a contribution to that effort, you can do that here.

Moving the needle

Our Greater Fall River Relay for Life effort continued to grow this year, as well. Our team broke the $9000 barrier for the first time this year. While I have had to step away from the planning committee for the full event because of the increasing demands of our work on NET cancer, we remain committed to helping find cures for all forms of cancer–and for supporting cancer patients as they struggle with the disease.

The second is of particular importance to NET cancer patients…

Our fifth Walking with Jane Scholar was named at Westport High School in June. That scholarship gives a student interested in pursuing a career in either medicine or science education selected by the science department at WHS $1000 every year for four years while they work on their undergraduate degree. We also gave our second and third scholarships at Bridgewater State University, Jane’s alma mater. Those are one year $1000 grants for students selected by the university.

Original vision and current reality

This fall, we received final recognition from the IRS as a 501 (c)(3) charitable organization. That recognition is retroactive to our incorporation in May of 2012. I cannot tell you how pleased I am to have that piece out of the way.

Our fifth Walking with Jane Scholar was named…

But I had a very different vision of how all this was going to work in the spring of 2011. I thought then we would be raising a lot more money directly than we are. Instead, we are inspiring other people with far greater resources to step up and make donations to groups working on this fight other than us. Since Jane’s diagnosis there has been a steady increase in funding for NET cancer. Today, three times as much money is raised and spent on NET cancer as was in 2010. People tell me that we are, in part, responsible for that. I will take them at their word for that.

Moving forward

My vision has become increasingly decentralized and more regional. This fall, I wrote extensively on a marketing strategy for NET cancer so that we can raise not only more money for research but also to raise public awareness about the disease. I hope the model I proposed at the end can be used to increase both those things.

…we are inspiring other people with far greater resources…

Whether it will or not, remains to be seen. But the NET cancer community can rest assured that we will not stop trying to move things forward against this monster while life endures. I remain as determined as ever to be able to stand at my wife’s grave to tell her her disease is dead ands will not kill another human being again.

Final words

But I am also very aware that this is not a fight any of us can win on our own. We’ve had a lot of help the last four years from people all over the country–and I hope we have been equally helpful to them. Thank you to all of you who work in this vineyard. May the year ahead bring us the cure we all seek.

…to be able to stand at my wife’s grave…

And I am also very aware that I need to take periodic breaks if I am going to continue doing what I am doing. While I know I had promised a series on immunotherapy this month, it is increasingly clear that is unlikely to happen before January. I will likely write one more piece before New Year’s, but for the next few days I am going to try to get some rest and spend some time thinking about things other than cancer.

And I heard him exclaim…

I hope all of you have a wonderful holiday, whichever of them you celebrate, and that your new year is filled with new hope, improved health and reduced christmas stress.

Thank you to all of you…

Happy Christmas to all, and to all a good night.

Pax et lux,

Harry Proudfoot

Patients, caregivers, researchers, widows and widowers and children all walked with our team this year.
Patients, caregivers, researchers, widows and widowers and children all walked with our team this year. Merry Christmas to all of you who worked this year to end this scourge.

 

Help us kill Jane’s cancer for everyone

Boston Marathon Jimmy Fund Walk, Death, Jane, Marketing NETs, NETwalkers Alliance, Uncategorized

Jane’s last waking hours

We were watching a “Frazier” rerun in Jane’s hospital room four years ago today. Jane had not slept much the night before but we had moved her out of bed earlier. Now she was having trouble keeping her eyes open. The nurse asked her if she wanted to get back in bed and take a nap—and she did.

…you’ll be making a difference in the lives of carcinoid/NETs patients…

Moving Jane from the chair to the bed meant getting her back into a sling that hung from a crane. I remember having to support her head as we moved her that morning—something I had not had to do before. Alarm bells should have gone off in my head at this new weakness, but we had been in the hospital for more than a month. I had helped change her bedclothes after multiple episodes of diarrhea, walked her through two comas, major heart surgery, and, just the week before, the installation of a pacemaker.

Everything looked promising

Neither of us had gotten much sleep the night before, but I was more optimistic every day that we were headed in the right direction in this long battle against her NET cancer. She had begun physical therapy again two days before and today was the third day in a row she’d been able to spend time out of her bed.

I had helped change her bedclothes after multiple episodes of diarrhea…

I held her hand as she fell asleep—and continued to do so as I read once she was napping.

Jane’s last carcinoid attack

Maybe 45 minutes later the nurse came in to take Jane’s blood pressure. While Jane was on a monitor, sometimes it would stop working because of her position and how thin her arms were. The nurse said she was checking it manually because of that ongoing problem.

…I was more optimistic every day…

But the monitor wasn’t the problem. Jane’s blood pressure was crashing as a new carcinoid attack went coursing through her body. This time there was nothing left we could do to stop it. Thirty-eight hours later, she would be dead.

What we learned from Jane’s case

In four months, from Jane’s single case, her doctors told me, we had essentially doubled our knowledge of carcinoid syndrome and NET cancer. It isn’t that we learned that much, it is that we knew so little. But Jane was a scientist—and she knew how important even the small amounts doctors and researchers could learn from her body as it dealt with the disease could be.

Thirty-eight hours later, she would be dead.

The world of NET cancer has changed a lot in the four years since Jane’s death. We’ve found some new techniques that can slow down its advance and discovered new methods that can help us detect it more reliably. And we know a lot more about the genetics that drive the disease. But we still have nothing that looks like a cure.

The search for answers

Each year since Jane’s death, I’ve taken on the Boston Marathon Jimmy Fund Walk to raise money for the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute to help find answers to the strange cancer that killed her. From those four walks I’ve personally raised over $45,000 for the cause.

…we still have nothing that looks like a cure.

I’ll walk again on September 20, 2015 and serve as captain of the NETwalkers Alliance team—a new name for the Caring for Carcinoid/Walking with Jane, Hank and Anne team I’ve worked with the last four years. Every penny we raise will go to researching carcinoid/NETs and finding a cure for the disease that killed my wife.

You can help

You can help in one of two ways. First, you can join our Walk team. You can walk the full 26.2 miles of the historic Boston Marathon course from Hopkinson to Boston, or you can walk 13.1 miles along the same course, starting in Wellesley, or you can walk five miles from Cleveland Circle, or three miles from the Jimmy Fund Clinic. In each of those cases, you’ll need to raise $300. Or you can be a Virtual Walker, cover no distance, and raise whatever you can.

I’ll walk again on September 20, 2015…

Second, you can make a donation to my walk, to another walker on our team, or to our team in general.

Either way, you’ll be making a difference in the lives of carcinoid/NETs patients–and hastening the day I can stand at my wife’s grave and tell her that her cancer will never kill another living soul.

Pax et lux,
Harry Proudfoot
NETwalkers Alliance
(Formerly Caring for Carcinoid/Walking with Jane, Hank, and Anne)

Join us as we walk to kill carcinoid/NETs on September 20, 2015 in the Boston Marathon Jimmy Fund Walk.
Join us as we walk to kill carcinoid/NETs on September 20, 2015 in the Boston Marathon Jimmy Fund Walk.

Marketing NETs: Family matters 2–Part 11

Marketing NETs

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.)

We build family one person at a time , one group at a time, one story at a time.
We build family one person at a time, one group at a time, one story at a time.

Marketing NETs–Family matters 1–Part 10

Marketing NETs

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.)

A non-blood family grows through shared experiences and caring about each other's issues.
A non-blood family grows through shared experiences and caring about each other’s issues.

Marketing NETs: Social Media–Part 9

Marketing NETs, Uncategorized

Who really understands social media?

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.
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.

Marketing NETs: Publicity stunts–Part 8

Marketing NETs, Uncategorized

The Ice Bucket Boost

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’s Relay 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.
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.

 

 

Marketing NETs: Celebrity Power–Part 7

Marketing NETs, Uncategorized

Lessons of the past

Lou Gehrig, the legendary iron-man of baseball, put ALS on the map in 1939. Before that, it was a mystery disease no one knew existed. His celebrity status elevated an illness diagnosed less often than carcinoid to public consciousness in a single afternoon.

We want a cure.

Unfortunately, that awareness of the disease did not result in a sustained increase in research money. I have a former student who deals with that disease every day because, 75 years later, we still have no cure for it. This year’s ice-bucket challenge may change that–but Gehrig’s announcement did not.

Lessons of the present

Michael J. Fox’s announcement several years ago that he has Parkinson’s Disease has generated both greater awareness of the disease and an increase in funding for research. But it was a disease that already had more than a million people living with the disease–and another 50,000 a year being diagnosed. Fox put an immediately recognizable face on the disease–one with easy access to the talk show circuit. But how much of a game-changer his announcement will prove in the long-term is harder to gauge.

His celebrity status elevated an illness…

No one, however, can argue against the impact of Betty Ford’s announcement in 1974 she had breast cancer. It really did change the complexion of the fight against breast cancer because it made it OK to talk about it in public. Part of the reason this month’s Breast Cancer Awareness Campaign is as big as it is traces back to Betty Ford’s courageous admission that she had the disease. It was a game-changer whose size is hard to explain to people who were not alive at the time.

Missed celebrity moments

An announcement from Apple CEO Steve Jobs that he was suffering from carcinoid/NETs or pNETs before his death might have had a similar impact. He had the celebrity that could have electrified the general public. Wendy’s founder Dave Thomas, who is also reported to have had this cancer, could also have had an impact. Neither made that choice–and part of me understands why.

Fox put an immediately recognizable face on the disease…

Think about the symptoms of carcinoid/NETs and pNETs: endless diarrhea, constant bloating and gas, and sudden episodes of flushing are not things people are comfortable talking about. Gastrointestinal distress is polite jargon for some of the most embarrassing physical problems we can conceive of. My wife was embarrassed when she passed wind while she was asleep if I were thoughtless enough to mention that it happened.

Embarrassment factors

We won’t discuss her extreme embarrassment when her diarrhea became uncontrollable in the last weeks of her life and what that did to her self-image. Put yourself in the position of a celebrity with a carefully crafted public image of self-control and it is easy to understand why none has emulated Gehrig, Fox, or Ford on carcinoid/NETs.

Think about the symptoms of carcinoid/NETs and pNETs…

And would such a celebrity “endorsement” have a sustainable and positive impact on either awareness or fundraising? That would, in part, depend on the celebrity and his or her sustained support of the disease. Part of the problem for ALS was that Gehrig simply was in no position to lead that charge for very long–and he didn’t look sick when he left the public eye.

Celebrity vs. prevalence

Fox and Ford made sustained efforts to keep both themselves and their disease in the public consciousness for a sustained period. But the prevalence of both their diseases helped maintain public attention as well. The breast cancer community built on Ford’s announcement and presence. They created an infrastructure on that foundation that could be maintained and expanded–and has worked for nearly 40 years since to do so.

…he didn’t look sick when he left the public eye…

Breast Cancer Awareness Month did not just happen. It is the result of four decades worth of effort at the grassroots level to capitalize not only on Ford’s announcement, but also on the number of people and their families facing the disease. The combination has created enormous leverage–but it did not happen overnight.

Dangers of celebrity

Whether Fox will ultimately do the same for Parkinson’s remains to be seen. The Parkinson’s community is far smaller than the breast cancer community. Further, will the Parkinson’s community mount the same kind of grassroots effort to build on the foundation Fox’s personal effort has created? Or will it, now that it has its celebrity spokesperson, sit back and watch?

Breast Cancer Awareness Month did not just happen.

That is one of the dangers of the prominent celebrity spokesperson where any group is concerned. There are, of course, others, depending on the ego of the celebrity involved. A celebrity may decide to form his or her own foundation that will have far greater visibility, certainly, than a foundation without that star-power. But pre-existing foundations may find themselves on the outside looking in after years of nurturing donors and researchers.

A double-edged sword

Celebrities can also become paternal or maternal about pre-existing foundations they choose to associate themselves with. This can be a good thing, perhaps, but it can also be a bad thing if they decide they should be in control of the day-to-day decision-making or want to take a hand in deciding where the research dollars go.

Whether Fox will ultimately do the same for Parkinson’s remains to be seen.

I’m not sure where I am on putting a celebrity face on this disease–or whose face that should be. But regardless, we all need to remain acutely aware that a celebrity face will not automatically bring us a sustainable increase in either awareness or research funding. Seventy-five years from now we don’t want to be in the position ALS finds itself a similar amount of time after Lou Gehrig became its face.

We want earlier and more accurate diagnoses. We want new and better treatments. We want a cure. None of those things will happen without an ongoing commitment from each of us to bring that about–whether we find a celebrity spokesperson or not.

(Editor’s Note: This is the seventh 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 publicity stunts like the ALS ice bucket challenge.)

Grassroots efforts will remain important whether a celebrity spokesperson turns up or not. Foot soldiers ultimately win wars, not spokespeople.
Grassroots efforts will remain important whether a celebrity spokesperson turns up or not. Foot soldiers ultimately win wars, not spokespeople.

Marketing NETs: Time matters–Part 6

Marketing NETs, Uncategorized

Cancer awareness envy

I have to  admit to a degree of envy as a carcinoid/NETs advocate at this time of year. Breast Cancer Awareness Month begins tomorrow. For the next month, the United States will turn pink–right down to the laces on a football players shoes. There are special cans of soup, special kitchen appliances–special everything.

…we need to have an intelligent discussion…

There is no type of cancer that has been better marketed than breast cancer. Never mind the charges of companies pink washing their image and only turning over the smallest possible percentage of the income earned to breast cancer research. Those of us trying to raise awareness and funds for carcinoid/NETs would take those problems in an instant if we could have that kind of stage for even one day–let alone an entire month.

Breast cancer deserves its time

Don’t misunderstand me: breast cancer and breast cancer research very much matter to me. My younger sister is a long-term breast cancer survivor, I lost one of my best friends to it this winter, and I have many other friends and acquaintances who have been touched by it–including my sister-in-law, who is a five-year survivor. It is the third most common cancer in the US. It deserves a substantial budget and substantial attention.

I have to  admit to a degree of envy…

But for the next month, it will drown out every other cancer in the public consciousness. And for a month after that, the general public will remain burned out on cancer.

Caught in the backwash

There could be a worse time than November to schedule NET Cancer Awareness Day. There could be a worse month for Massachusetts to proclaim as NET Cancer Awareness Month. We could have picked a day in October–or tried to use the entire month. Even without Breast Cancer Awareness Month in October, however, November is not an ideal time of year to schedule an awareness day for any disease–let alone one as historically challenged as carcinoid/NETs.

…the general public will remain burned out on cancer.

Even in early November, the weather has already begun to become dicey for outdoor activities in much of the country. People are thinking about Thanksgiving and Christmas. And the major charities have shifted their mail campaigns into high gear for end-of-year giving. And let’s not mention that November 10 is the day before Veterans’ Day–Armistice Day in the rest of the Western world–and that the focus in that timeframe is on the military and the end of World War I.

Wrong time of year

We are essentially shouting our message at people who have had an entire month of cancer stories thrown at them by the media–a media that, by the end of October, is ready to be done with cancer stories for a while because Thanksgiving is coming and Christmas is coming and we need uplifting stories about cures if we are going to do cancer at that time of year. And carcinoid/NETs doesn’t have those kinds of stories to tell.

People are thinking about Thanksgiving and Christmas.

In marketing, timing matters. November is the worst time in the year to be selling anything other than toys, turkeys, and honoring veterans.

Finding the right time

In the short-term, we have to live with November 10 as NET Cancer Awareness Day. But in the longer term, we need to have discussions about a better–more marketable–time to do this. We need a time when the weather is warmer and when there are fewer distractions. And when we won’t be dealing with the Breast Cancer Awareness Month hangover.

In marketing, timing matters.

May, June, and September strike me as ideal months. The weather is relatively pleasant and there are no major holidays in them with the kind of punch Thanksgiving and Christmas deliver. Of course, other cancers may already have a claim on those months. Certainly, May and June would put us in competition with many local Relays for Life. But even that would be better than dealing with the triple behemoths we face in November.

Please respond

As is the case with much of what I’ve written on the marketing issue in recent weeks, we need to have an intelligent discussion about this topic that goes beyond what I have written to this point. Once I’ve finished looking at the problems we face in marketing carcinoid/NETs to the broader public, I will make a number of concrete proposals about what I think we should do.

May, June, and September strike me as ideal months.

But between now and then, we need everyone who is dealing with this disease to take some time to think about these things and join the conversation about what we need to do–and how we can best accomplish what we all agree needs to be done.

(Editor’s Note: This is the sixth of 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 next part of this series, we’ll discuss the potential of a celebrity spokesperson.) 

There is a lot to be said for picking a time other than November for NET Cancer Awareness Day.
There is a lot to be said for picking a time other than November for NET Cancer Awareness Day.

Marketing NETS: Press release–Part 5

Marketing NETs, Uncategorized,

Get media attention with a press release

Writing a press release is pretty straight forward. For our purposes, the press release will exist not to be the story that gets printed, but rather to be the fire-starter that gets a reporter or editor thinking about doing a story. But in some cases, you may need to write a press release that will be the entire story–things like announcing specific events. I’ve included a model here for that as well.

My purpose here is not to teach you to write a press release from the ground up. If you need that kind of information, here’s a site that will teach you all the nuts and bolts. What follows are a set of model press releases for specific uses that you can modify for your own purposes.

Technical formatting matters

A couple of things I do need to point out. These releases are set up to be emailed. If you were mailing them, they would need to be double-spaced. The ### at the end of each press release is supposed to be there in what you send out. It tells the contact person the story ends here.

Press releases need to be kept short–no longer than one page of typing paper. They need to include a single contact person for the reporter or editor to talk to. That person can direct the reporter to doctors or researchers for technical information, but needs to be knowledgeable enough about the topic to handle most of the general questions a reporter may have.

Finally, these are models. You should not use them word for word–you need to customize them for your particular situation.

Press Release #1 (Interview opportunity)

For Immediate Release

Local man/woman has rare cancer

Fall River (Use the place you live here, instead)–The average doctor or nurse has never heard of the cancer Jane Dybowski has–in fact, neither has the average oncologist.

Dybowski has Neuroendocrine tumor (NET) cancer, sometimes called carcinoid cancer. She has multiple episodes of diarrhea every day, constant insomnia, regular episodes of flushing and painful bloating. Doctors told her she had irritable bowel syndrome, anxiety, and early onset menopause.

The failure to diagnose the disease was not the fault of her doctors. Until recently, this form of cancer was considered so rare that it was rarely mentioned in medical schools. Young doctors are taught, “When you hear hoofbeats, think horses, not zebras.” That means a set of symptoms is most likely describing something common, rather than something rare.

But about 15,000 cases of this cancer will be diagnosed in the US this year–and about 120,000 Americans know they have it at any given time.

There is no cure for this disease if it is not caught early–and it is very hard to diagnose. Standard scans and blood tests rarely detect it.

Dybowski wants to raise awareness of the disease for NET Cancer Awareness Day on November 10 and is available for interviews by local media. To arrange an interview, contact her husband, Harry Proudfoot, at 1-555-555-5555.

For more information on the disease, visit our website at walkingwithjane.org. More information is also available at carcinoid.org and caringforcarcinoid.org.

###

Press Release #2 (Event)

For Immediate Release

Clam cakes and chowder event to fight cancer

Walking with Jane will sponsor a clam cake and chowder dinner at the Westport American Legion Hall, 489 Sanford Rd., October 24 from 4:30-7 p.m. The event benefits the group’s Greater Fall River Relay for Life team.

Tickets are $12 and can be ordered in advance by contacting Harry Proudfoot at 555-555-0279. Tickets can also be reserved by sending a check to Walking with Jane, P.O. Box 9721, Fall River MA 02720.

Only 200 tickets are available for this event. Take-outs will also be available.

###

Press Release #3 (NET Cancer Awareness Day)

For Immediate Release

Fighting a cancer most people have never heard of

November 10 is NET Cancer Day

Most people have never heard of neuroendocrine tumor (NET) cancer–which is sometimes called carcinoid cancer. Most doctors have never heard of it either.

But 12,000 Americans will die of it this year–and another 14-15,000 will learn they have it, often after years of being told they have something else.

That’s not because their doctors are incompetent but because detecting the disease–even if you know to look for it, is devilishly difficult. The primary tumors rarely get larger than a lentil–and can form almost anywhere in the body. Most are virtually invisible to all but the most advanced scanning techniques. And the symptoms can look like any of a number of more common diseases and maladies.

To further complicate matters, the tumors can–but don’t always–produce any of the more than 24,000 hormones and peptides the body produces. Even a small increase in any of those can do bad things to the body’s internal chemistry, affecting digestion, sleep, blood pressure, respiration, heart rate, fertility–virtually anything and everything.

Right now, about 120,000 people in the US know they have NET cancer. How many people actually have the disease and die of it–while being told they have something else–is anybody’s guess.

There is no cure for this form of cancer unless it is detected very early–when surgery will sometimes do the job. But for most patients, all doctors can offer is a series of holding actions that will slow the progress of the disease and ease some of its symptoms.

And chances are that reality will not change anytime soon. This year, less than $10 million will be spent on this disease–less than a rounding error on what we will spend on better-known cancers, as one doctor puts it.

November 10, doctors, researchers, patients, caregivers and organizations around the world will work together to change that reality through the fourth annual NET Cancer Awareness Day.

Locally, (insert here what you will do on that date to raise awareness)

For more information contact Harry Proudfoot at 555-555-5555.

For more information on NET cancer visit netcancerday.org, carcinoid.org, caringforcarcinoid.org, and walkingwithjane.org.

###

Final words on press releases

I hope you will find these model press releases useful as we all gear up for NET Cancer Day on November 10. Remember, the more you can make these releases locally relevant, the better. I’ve tried to keep the formatting of the releases as they need to be–bold face headlines and the Immediate Release notification in the upper left.

(Editor’s Note: This is the fifth of 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 next part of this series, we’ll look at the importance of timing events so they don’t get lost.) 

Writing and distributing a press release is one way you can help spread the word about NET cancer--especially if you can attach that press release to a local person or event. Not everyone has to walk or set up a team.
Writing and distributing a press release is one way you can help spread the word about NET cancer–especially if you can attach that press release to a local person or event. Not everyone has to walk or set up a team.

 

Marketing NETs: Grassroots effort–Part 4

Marketing NETs, Uncategorized

Learning from a failed effort

All news, like all politics, is local. I forgot that in the early months of Walking with Jane’s effort against carcinoid/NETs. Despite years of work in journalism, I thought if we could put together a single, compelling package of stories from a central source that newspapers across the country would snap those stories up and use them.

That effort begins with each of us.

Those stories are still in our press kit. They have found their way into maybe three regional publications and inspired one or two other newspapers to do a bit more with carcinoid/NETs than they might otherwise have done. But for the most part the hundreds of hours of effort fell on deaf ears.

Local effort will always bear more fruit

I should have known better. As a high school journalism adviser, I constantly reminded my students that people wanted to know about the people in our school community–that barring we landed an interview with the president of the United States, our readers would not be likely to read something about someone whose life held little meaning for them and who did not have local roots.

All news, like all politics, is local.

Go through your local newspaper and you will realize they largely subscribe to the same idea. The headlines on page one of my local paper start with a campaign to recall our mayor, a story on the improvement in city schools, and a meeting between our House rep. and local business owners. The only non-local story on that page is the US attorney general’s resignation, which got a headline and 60 words.

National awareness builds from local awareness

If we are going to reach a national audience, the effort has to begin with local stories–lots of them–bubbling up from the local level. I can interview a Fall River patient about their experience with carcinoid or NET cancer, but there is no audience for that story in North Texas or St. Paul or Spokane beyond others who are fighting the same disease. Any effort I make to get that published outside my immediate area is going to be a waste of both time and effort.

I should have known better.

And my pitching your story from here is likely to meet the same fate. If we want local news organizations to pay attention, requests or suggestions for stories need to be made at the local level. Modern media organizations exist to make money–not to distribute news and information. Unless something can be shown to have profit potential in the local market, it just is not going to fly.

What you know–and need to know

And that’s where patients and caregivers come in. You know your local media better than anyone else does. You know your disease better than anyone in your local area–or know who the local media can talk with who has the expertise you lack about the disease and how it works. You can also get that information by looking at the Carcinoid Cancer Foundation’s list of doctors with expertise in carcinoid/NETs.

…the effort has to begin with local stories…

Media outlets are beginning to plan late October and early November feature story and package ideas as we speak. Reporters are working on their  breast cancer awareness stories for October right now. If we want stories on carcinoid/NETs, we need to be pitching them to assignment editors and news directors in the next few weeks. If we wait until November to ask for stories about NET Cancer Awareness Day, it will be too late.

Beginning the effort

The effort to get our stories onto the news agenda begins with contacting the editor of the local newspaper and/or the news directors of all the local television and radio stations. We can also reach out to the program directors of local radio stations that do not have a strong news presence. There are two ways to do this–and either will work well.

You know your local media better than anyone else does.

The first is simply to call the person on the phone. If you know a particular reporter, calling them is the easiest way to go. You already have a relationship with them–even if it is a different context. And if they are not the right person to do the story–they are a sports reporter, say–they can direct you to who is. But before you get on the phone with anyone, know what it is you want to say. You want to underline that this is not your normal cancer, what kinds of symptoms you have, and how those symptoms restrict the way you live your life. You may also want to mention how difficult it is to find a local doctor with knowledge of NETs–or how far you have to travel to get treatment.

The basic press release

The second approach is to either mail or email the person a press release or letter. Again, describe the disease and what it is like to deal with it in your context. Include all the same things I’ve talked about for the phone call, as well as a phone number the person can contact you at. Also, make sure you include the NET Cancer Day hook. News people love to be able to hook a local story to a national or international event.

…know what it is you want to say.

Regardless of the method you choose, contact as many different local media outlets as you can, including your local cable outreach folks. They won’t all jump on the story. If you can get one local newspaper, radio station and television station to do a story, you’ll have accomplished a lot. And don’t be disappointed if you only get one outlet total to bite.

Making the effort pay off

Next, prepare yourself for the interview. For the most part, you are just going to tell your story. But if you can help the reporter out with connections to your primary care doctor, oncologist, or someone in the region with expertise, they will see that as a plus.

…contact as many different local media outlets as you can…

After the interview, make sure you send thank you notes to everyone involved. Then make follow-up calls when something newsworthy arises–a new treatment, for example, or a trial of a new therapy that is starting up in your area or that you will be involved in. If you take good care of your local media folks, they will take good care of you down the line. Remember that every article or story we manage to get in front of people’s eyes builds awareness of the disease–and will increase the likelihood of donations.

We need to change the numbers where our disease is concerned. That effort begins with each of us.

(Editor’s Note: This is the fourth of 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, I’ll provide a model press release for the kind of NET Cancer Day-based interview I’ve suggested above.) 

Raising awareness--or money--requires effort from everyone affected by carcinoid/NETs. We all have to take the lead in our local areas.
Raising awareness–or money–requires effort from everyone affected by carcinoid/NETs. We all have to take the lead in our local areas.