Marketing NETs: Publicity stunts–Part 8

October 15, 2014Marketing NETs, UncategorizedMarketing NETSwalking with jane

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.

Trials necessary experiments toward cures

October 14, 2014Uncategorizedwalking with jane

Questioning clinical trials

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. — *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.*

Remember: 46 months later

October 10, 2014Uncategorizedwalking with jane

Thirty-six hours of final memories

I remember that Thursday night 46 months ago as vividly as if it just happened. Jane had gone into a coma about 10 a.m. She came out of it about noon for a few minutes when she heard Jen Chan’s voice. She woke up again for barely ten minutes just before 6 p.m. She could not talk–could barely move her head. I told her she was going home to the garden–kissed her good night.

…I’m not done with living yet…

I remember that Friday 46 months ago just as vividly–the day we turned off the respirator and removed the feeding tube and all the monitoring wires and waited for her body to stop. I remember reading to her from Psalms and Job, reciting pieces of the Tao and chanting our prayers for the dying. I remember the minister in the elevator who came by to be with us despite it not being his floor.

The last day of us

I remember Jen spending her lunch hour with us before going back to the clinic. “My body will be with them–and my mind,” she said as she left, “But my heart will be with the two of you.” And I remember both Jen and Javid Moslehi, her cardiologist, stopping by on their way home.

I remember that Friday…

I remember our friends arriving and sitting with us all through the day and into the evening. I remember holding Jane’s hand and telling her it was OK to go. I remember talking with the nurses–telling the new ones who Jane was and what she had done in her life–and the ones who had been part of that month-long journey in that room.

Final minutes

I remember the sudden change in her breathing–the little catch that warned me to kiss her one last time–to capture that last breath in my mouth, in my heart, in my soul. And then she was gone.

I remember making the phone calls…

I remember the intense emptiness of that moment that cut that which we had been together in half and left the us lying dead–and me still breathing. I remember making the phone calls–first to her father and sister, then to my father and my family, and then to our friends. I sat in the room with her cooling body, fighting to deal with the rising agony of numb grief.

Aftermath

I remember Scott driving me home. I remember coming up the stars to the darkened front door and putting my key in the lock. I remember the silence on the other side of that door–a thing so thick and empty that it haunts me even now. I remember crawling into my side of the bed and waiting for the tears or sleep or death–and not much caring which arrived first.

And then she was gone.

And I remember waking up the next morning to that same pounding silence–a silence that erupts even now–even 46 months later. It took over three years before any memory of Jane outside those last months could fight its way through to my conscious mind. There was so much joy in our first 21 years of marriage–but the tsunami of loss washed them out of me. I knew they were there–I just could not see them or hear them or taste them or touch them or smell them.

Sight to the blind

Our wedding came back first. Then the day she said she would marry me and bits and snatches from our honeymoon. Sometimes a moment surprises me–a summer walk or hike, shoveling snow or working in the garden–a random moment that bursts into my mind like a July firework and illuminates who we were together.

…a silence that erupts even now…

I remember the first time we mowed the lawn here. We were like two small children fighting over the adventure of who got to push the lawnmower and for how long. I can still see her, the sleeves of her t-shirt rolled up onto her shoulders, pushing that mower down the long straightaway of the backyard–a look of fierce determination and sublime joy etched across her face.

The beginning

And I remember our first bike ride together–our first date that we never called a date. I remember stopping at a dam in Swansea and sitting there watching the water and talking in the warm sun of an early fall afternoon. I remember our first dinner-date and staying out talking by the ocean until after 2 a.m. I even remember what we both had for dinner that night.

I remember the first time we mowed the lawn…

We should still be together–making new memories and forging new paths. But 46 months have passed and any new memories, paths or adventures I will have to create without her. It hurts like hell to think that, to write that, to say that. But it does not change that essential truth.

A future exists

Part of those new memories will continue to revolve around fighting to find a cure for the carcinoid/NETs that killed her. I’ve made promises on that I need to keep. But Jane also made me promise to keep moving forward–to keep living and exploring. I’m not done with mourning yet–I don’t think I ever will be completely. But I’m not done with living yet, either–and there are places and things I want to explore.

We should still be together…

Jane would like that.

I remember he last picture we took together on our last trip together. It was in front of this flowerbed in Meredith, NH. I need to be more than a shadow of what we were. — *I remember the last picture we took together on our last trip together. It was in front of this flowerbed in Meredith, NH. I need to be more than a shadow of what we were.*

Extraordinary is really ordinary

October 6, 2014Uncategorizedwalking with jane

Extraordinary journeys

There are pieces of this journey I do not understand. I do not feel I am doing anything special or out of the ordinary. Yet people constantly tell me they do not know how I do what I do; that Jane is very proud of me; and that what I do here and elsewhere to raise funds for this disease and increase awareness of it is extraordinary.

…a means of hiding my own cowardice.

People tell me this is not how widowers–or widows–act. They tell me most turn away from the relationship that was and at least walk, if not sprint, away from the disease or accident that has ended their couple-hood. I will admit to hearing both Jane and my mother chiding me periodically for not having moved on by now.

Extraordinary vows

In fact, Jane told me the day before she went into the hospital that she did not want me to mourn her long if she died–that she expected to move on with my life–that she expected me–and wanted me–to “find a younger model.” I said to her that afternoon that the only “model” I was interested in was her.

People tell me this is not how widowers–or widows–act.

I took vows the day I married her. They are vows I took seriously all the years of our marriage. The vows we both took that day ended on the day she died. But while she was sick, I took other vows, made her other promises. So did she. We both vowed we would kill this disease. She killed the disease within her, ultimately, in the only way she could. She died and took it with her.

Extraordinary disease

But my vow did not die with her death. It could not. Jane and I were never satisfied with doing something only for ourselves. Jane’s death did not kill carcinoid/NETs for others. It merely added fuel to a fire that, I hope, will lead to the death of this disease for everyone. I tend that fire now, as do many others. Only my own death or the death of carcinoid/NETs can release me from that vow.

…she expected me–and wanted me–to “find a younger model.”

But even were that not true, I would continue to fight this battle. I have seen this cancer. I have seen what it does to the body. I have seen what it does to the mind. I have seen too much to let it live if I can help to kill it.

Extraordinary things

What I do is not, to me, extraordinary. It is what one does when one sees others suffering. It is what one does when one sees sickness or injury. It is what a human being does to help and to heal others. It is what we are, each of us, called to do.

But my vow did not die with her death.

I know that many people do not see the world as I see it. I know that the pain of loss is a crippling thing. I know that the simple act of remembering can drive any of us mad to the point that we run away and hide from those memories. We all succumb periodically to those moments.

Extraordinary courage

But it takes just as much bravery for a widow or widower to embrace another relationship as it does to face the disease that killed the one you love–and perhaps more. I know how much joy there is in love–and how much pain there is when death takes the beloved away. Every widowed person understands that agony.

It is what we are, each of us, called to do.

So, to embrace that kind of love again, knowing you will either face that pain again–or give that pain you know so well to another on your own death–takes an equal, though different, kind of courage and strength.

Time for contemplation

There are times I wonder if all my work on this disease is a means of hiding my own cowardice. I suspect those who embrace another love ask the same question about their actions: are they using love to avoid dealing with the issues of what killed their spouse?

Every widowed person understands that agony.

And I suspect there is a bit of avoidance in both circumstances–no matter how altruistic we want to believe we are. These are among the things I plan to think on during the next week while I stare at the waves in both the ocean and the trees. I hope to discover some extraordinary things there as I recharge my mind and body for the next chapters in my life.

*I never see anything I do as extraordinary. Others do. The truth is , extraordinary is in the eye of the beholder.*

Mortal bodies, minds need rest

October 3, 2014Uncategorizedwalking with jane

Mortal thoughts

I’m feeling mortal the last few days. Truth be told, the last ten months have taken a severe toll on me mentally, emotionally and physically. Only the months leading up to and following Jane’s death in 2010 left me feeling more shattered than this year has.

My last real break was at Christmas.

Since January, I’ve lost a close friend to triple negative breast cancer, blundered my way through my father’s first strokes to his eventual death in August, dealt with a niece’s death, travelled to Seattle to close up my father’s house–and been ambushed by all the memories that effort called up.

Mortal reality

And every week, I’ve learned of at least one death of someone in the carcinoid/ NETs community that I have come to know and care about. Generally, it’s been more than one. Each of those deaths reminds me that we still do not have a cure–and that there are people out there who desperately need that.

I’m feeling mortal the last few days.

I’ve also dealt with three surgeries on my gums aimed at keeping my slowly dissolving teeth in my mouth and a knee injury that prevented me from doing the Marathon Walk the way I wanted to do it. Both remind me that I am mortal, too–and that the time I have to bring about change is limited.

Mortal accomplishments

Despite all that, this has also been a year of singular accomplishments. Our Boston Marathon Jimmy Fund Walk team will have raised over $65,000 for carcinoid/NETs research by the end of October–over $17, 500 of that total directly from my efforts; our Relay for Life team raised another $9000+ for the 2014 effort–and 2015 is off to a good start; this website has gone from being within days of closing to our three biggest months ever over the last six months–and total views for the year of close to 11,000 since January.

Both remind me that I am mortal, too…

I’ve also rediscovered a whole bunch of people from my past who remember me with fondness and have honored me with their renewed friendship. I’ve had a book dedicated to me and been reminded in myriad other ways that I have made a difference in people’s lives. I cannot tell you the difference a single kind note can make in a week of unrelenting sorrow.

Finding a window

There is much that remains on the docket between now and the end of November. I have a craft sale to play vendor at tomorrow, a Walking with Jane team to help with in the Fall River Half-Marathon on October 19, and a clam cake and chowder dinner to do the PR for on October 24. November is also filled with things to do–and I still need to finish the carcinoid/NETs marketing plan I’ve been working on for several weeks.

I cannot tell you the difference a single kind note can make…

One week from today marks the 46th month since Jane’s death. A few days later will mark four years since our first meeting with her heart surgeon. Each day of every fall is freighted with memories of four years ago–and this fall those anniversaries have been particularly difficult.

A short break

Every three months, I try to take a week to step away from cancer and everything to do with it. But this year those weeks have dissolved into more distress rather than being a time of reflection and rest. My last real break was at Christmas–and even that was marked by the knowledge of my friend’s impending death. So I will do the craft fair tomorrow, take care of a couple of things that won’t keep on Monday–and then take a few days to put my mind in neutral.

Each day of every fall is freighted with memories…

Part of me will feel guilty about that: those of you living with carcinoid/NETs can’t take a vacation from your bodies or what the disease is doing to you. Those of you who are family members taking care of them don’t really get a day off either. But my mission now is different–as are my circumstances. I can’t continue to do my best work without an occasional break–and it’s time I took one.

I am but a shadow without Jane--and this week I feel especially mortal. — *I am but a shadow without Jane–and this week I feel especially mortal.*

Marketing NETs: Celebrity Power–Part 7

October 2, 2014Marketing NETs, UncategorizedMarketing NETSwalking with jane

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.*

Marketing NETs: Time matters–Part 6

September 30, 2014Marketing NETs, UncategorizedMarketing NETSwalking with jane

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.*

Marketing NETS: Press release–Part 5

September 29, 2014Marketing NETs, UncategorizedMarketing NETS, Press Releaseswalking with jane

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

September 26, 2014Marketing NETs, UncategorizedMarketing NETSwalking with jane

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.)