The plan–at last
What follows is a plan for marketing carcinoid/NETs to the general public. But it is only a broad outline of the twelve major issues we need to address. The plan suggests specific actions, but does not advocate a specific timetable for bringing those things about. We need, first, to reach a broad consensus about whether these ideas make sense and form a basis for a reasonable plan.
Now it is up to the other folks in this community…
The next step in the process is a period for people to comment on the plan and the ideas it espouses. My plan is to step back until early December to let that happen. Depending on responses, we can then begin to talk about priorities and timelines for making what is here–or a modified form of it–reality.
A plan for an alliance
1. Create an alliance of groups willing to work together on greater public awareness and fundraising for research.
This alliance will need a name that unites each group or chapter while allowing each group to maintain its local identity. I suggest Allies Against NET Cancer or Allies Against CarciNETs.
The alliance will need to either adopt the Walking with Jane logo–minus the verbal copy–or create a new logo that creates a similar image for the general public about the seriousness of the disease and the seriousness of our purpose.
Members of the group will create content for both websites and local and national media aimed at promoting knowledge of NET carcinoid/NETs and raising research funds for it.
Members will freely share and distribute materials they develop to other members of the alliance for use or adaptation to local markets.
Each local group will adopt a local NET Cancer Program to promote and organize funding for.
Local groups without a local program to support will work with the local National Cancer Center to create and support such a group.
Members of the alliance will continue whatever patient outreach efforts they have in place and are free to expand their offerings as they see fit.
Members may display the Allies against CarciNETS/NET Cancer Logo on their websites and other materials in addition to their own logos.
A brand plan
2. Create or adopt a logo as a brand symbol for carcinoid/NETs for display with the general public.
The logo should demonstrate a strong human connection to the disease.
The logo should demonstrate a seriousness of purpose and commitment.
The logo should make a strong visual statement that will appeal to a general audience without previous knowledge of carcinoid/NETs.
A story plan
3. Develop methods of telling the carcinoid/NETs story to the general public.
Develop contacts in local, regional and national media among reporters, editors, and news directors.
Call local newspapers, television, and radio stations with ideas for carcinoid/NETs stories. These stories can include local events, local doctors, local patients, and local caregivers dealing with the disease. They can also include local fundraisers or other events aimed at getting the word out.
Attend local and regional press gatherings. Consider a booth at a regional press association conference.
Offer to do a monthly interview or program on local radio on NETs–or on cancer in general.
Write letters to the editor around specific dates or events–for example NET Cancer Awareness Day
Speak to local clubs and organizations.
Chambers of Commerce
Women’s Clubs
Boy Scout and Girl Scout troops
School teams and clubs
Be active in local Relays for Life
Tell your story in either writing or video form with other members of the Alliance on their websites.
Share your story on the Web during the Walking with Jane Social Mediathon on November 10.
Create your own local Social Mediathon on November 10.
Create and distribute 30 second Public Service Announcements on Facebook and other social media.
A naming plan
4. Agree on a single, easily remembered name for carcinoid/NETs and align all general materials and releases with that name.
Externally, we need to end the confusion our multiple names for carcinoid/NETs creates for the general public.
Internally, we may need to keep the multiple names so that we know what specific symptoms and syndromes we are talking about.
A standalone plan
5. Develop local, regional, and, eventually, national standalone events to raise funds and awareness for carcinoid/NETs.
Golf tournaments, walks, runs and other athletic events can raise substantial amounts of money but we may be reaching a saturation point with some of these.
Dinners, dances, comedy nights, concerts and receptions can attract donors–and create mailing lists.
Direct mail campaigns based on holiday card lists and locally generated lists can both tell the NETs story and raise money with smaller physical efforts than larger events.
Join the Social Mediathon on November 10 each year by providing content or making comments online–or set up your own using the materials we create for the Walking with Jane event, supplemented with your own materials.
Create local and regional events aimed at leveraging NET Cancer Awareness Day proclamations.
A piggyback plan
6. Continue to piggyback on larger events.
Every marathon could have a carcinoid/NETs themed team.
Continue to piggyback on the Jimmy Fund Marathon Walk and similar events.
Continue to piggyback on the Pan Mass Challenge and similar events.
Piggyback on local Relays for Life, although doing so will not increase funding for carcinoid/NETs in the near-term.
Continue to find other events to piggyback on.
A non-traditional plan
7. Develop non-traditional venues for raising awareness and funds
Develop and exploit relationships with regional sports teams. We’ve all seen what breast cancer awareness gets from the NFL. Locally, the Jimmy Fund gets a huge boost from its association with the Boston Red Sox. Support from even minor league teams could make a substantial difference.
Booths at craft fairs provide an opportunity to both distribute literature and raise money by selling crafts designed and produced by local patients and caregivers.
Sites at multi-family yard sales and flea markets provide the same opportunity without the need for access to crafty creators.
Relay for Life creates an opportunity to get the word out simply by fielding a team at the local event. Most events encourage teams to adopt a specific form of cancer to educate people about.
Create or join a video or audio podcast.
Write and send out a monthly press release for local media on the latest news on carcinoid/NETs, including links to medical and research information as well as local, regional and national events.
Develop contacts at regional cancer centers–especially those with NET cancer programs. They may have additional ideas.
A changing plan
8. We should consider changing the date of NET Cancer Awareness Day in the US.
The date currently is so close to Breast Cancer Awareness Month that both media and the public are frequently burned out on cancer awareness stories.
Much of the US is under threat of inclement weather for outdoor events.
June, August, and September offer better weather and fewer conflicts with other groups.
A spokesperson plan
9. We need to develop spokespeople from the carcinoid/NETs community as it currently exists. We should not wait for a celebrity savior.
Given that so much of what we need to do is at the grassroots level, local spokespeople will be more effective than a nationally recognized celebrity.
Celebrities are not beating down the door to talk about carcinoid/NETs.
Celebrities come into a cause with their own agenda that may not be ours.
We need to develop means of helping people become better writers and speakers, however, for this to really work.
A publicity plan
10. We should embrace publicity stunts only to the degree that they truly move all our objectives forward.
We need to learn the lessons of the Ice Bucket Challenge.
We want all our events to both increase knowledge and awareness while raising funds for the cause.
Given a choice between a one-time influx of cash and spreading knowledge for the long-term, we should always choose spreading knowledge.
Sustainable growth matters.
A social media plan
11. We need to develop a strong social media presence on all social media platforms, leveraging the strengths of each as effectively as possible.
Websites provide the opportunity for in-depth reporting and connections to resources.
Facebook provides space for conversation and connections to more detailed material.
Google+ largely duplicates what Facebook does but sometimes has a different, sometimes more reachable audience.
Twitter is essentially a headline service that can link to images and other, more detailed content.
Pinterest needs further exploration and exploitation. It seems to be growing more quickly than other social media and may represent the next area we need to have a stronger presence on.
Tumblr provides website space for those with limited budgets who are willing to deal with its limitations. It has a strong following the other sites do not seem to reach.
We need to remain aware of the visual nature of most social media and do a better job of using that fact.
Social media are a constantly evolving set of platforms we need to watch carefully and stay aware of.
A family plan
12. We need to work to create a strongly visual and familial image that the general public will want to become a part of.
We need to find ways to reward those who participate in our events in ways that will make them want to return to those events in future.
T-shirts, hats, and pins.
Warm greetings, handshakes and hugs.
Timely thank you notes and invitations.
We need to listen carefully to what patients and non-patients are saying and act on what they need from us.
We need to be honest, kind, and loving toward each other at all times–even when we strongly disagree with each other.
Tuning the plan
I began working on this plan back in June following a conversation at a Caring for Carcinoid Foundation event in May. The first 12 parts of the series leading to this post are designed to show the evolution of my thinking on the subject and provide detailed support for the ideas presented in this draft plan. A number of people have commented along the way, both here and elsewhere. Their thoughts have also found their way into what is here. They have my sincere thanks for sharing their ideas.
The next step in the process is a period for people to comment…
Now it is up to the other folks in this community to weigh in on what I have proposed here.
(Editor’s Note: This is the thirteenth–and last–in a series of pieces that will approach the problem of carcinoid/NETs not as a medical problem but as a marketing problem. If we are going to increase funding for the disease, we have to think of it as something other than a medical issue. We need to make it a human issue for the general public. I look forward to reading your comments.)
