Publicity and General Media

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Publicity is a much sought after, and sometimes elusive, avenue to building membership. For organizations just starting out, and even those already established, it is important to be constantly aware of opportunities for publicity and to learn to create these opportunities.

Everything you do is an opportunity for publicity. Start small, and be aware that even a new angle on an old activity might prove newsworthy. Regularly announce meetings to the local papers and radio stations. Invite reporters and photographers to your events. Make these events personal—with the permission of a person involved in the activity, highlight his or her participation. You can also get information into the local media without paying for space by submitting a calendar item or press release.

Publicity and General Media

Patrick Terry, PXE International

"In our first few years, we were pretty desperate for ways to get publicity so that we could find new members. So we cooked up this scheme—we'd announce a meeting for affected individuals—before there was a meeting planned! Thus the newspaper or radio in Anytown, Anywhere would carry the calendar item for free and we'd get phone calls from people with PXE! If there were only a few people, we'd plan a meeting for another time, or a regional meeting, to combine several cities. In the cases where a large number of individuals emerged, we'd have a meeting in someone's home or a church hall and grow our membership at the same time we provided support. PXE International knew that as an organization representing a very rare condition we'd have to be very creative!

Another method: having planned a dinner dance, PXE International negotiated free billboard space on the central expressway in Boston—instead of emphasizing the dance, they used the event to again attract members. The billboard read, "Dinner Dance for Pseudoxanthoma Elasticum (PXE). Call 781-784-3817." People familiar with PXE driving by the billboard reported almost driving off the road with surprised delight that someone knew of their condition."

Another way to do this is to submit a press release. A press release—more properly called a news release—gives a brief description of a new event, discovery, or achievement, and then provides a short description of your organization with contact information. You can use wire services to distribute these releases, which newspapers then pick up as source material for articles or as notes for future articles.

Wire services also distribute calendars that indicate when information needs to be submitted to publishers in consideration of special calendar dates, such as holidays. If you plan events in conjunction with holidays or have other ways to tie your organization to a holiday, you can coordinate a news release with this editorial calendar to increase the impact of your release.

You can contact major media outlets more directly with your story—look for radio, newspaper, and television connections. Do you have a member who has an interesting story? Does one of your members do something incidental to the condition, but the condition can be mentioned as a part of the story? Is the individual or family willing and ready to go public with their story? Your story is interesting, and news outlets are eager to tell it, you just need to connect with the media. Does someone in your organization have media experience?

Be sure to let media know about every event you create, including all your fundraisers and meetings. Don't just alert them. Give them a press kit, educational information, contacts they can use for interviews, and story angles. Relate your event to other newsworthy items wherever possible. A media report on gene therapy, the Human Genome Project, and all kinds of studies and discoveries can use a human interest story—you just need to show the publications the connection between the big event and your condition. The media rely on personal examples to help flesh out the human dimensions of these stories for readers, and your organization can help them while getting visibility for itself.

That said, do not compromise the safety or comfort of your members just to get some air time. Make sure you know the implications—particularly when affected individuals and their families are being interviewed or having their pictures used. There are, at present, no federal protections in place for genetic discrimination in employment or insurance, so be sure that interviewees are not risking discrimination by being public about the condition—and that they understand the implications of participating.

Getting the Media Interested

Whether it's to increase awareness of your organization or to seek funding, it's important to be able to offer a quick sound bite about your organization that will capture an individual's attention and get the media interested. Although creating these short speeches can often be challenging, the Pepsi Refresh Project offers tips on how to be both succinct and compelling.


Another way to get the media interested is to include stories in small, hometown newspapers.

Beth Anderson, Founder, Executive Director, and President of the Board
PAGER Association

"As part of a big awareness campaign, we want to get stories about our members placed in their hometown newspapers. We don't have time to do the placement work or write articles ourselves, so we put out a plea for volunteers. Most small newspapers will take human interest/first-person medical articles from independent writers.

Our ad was for a "virtual" opportunity, which means the volunteer can work from home. We titled it "Amateur Journalist" and said we would match them up with a family that wants to be interviewed. I sent out instructions with each match, telling them how to work together to place the story in small newspapers where the family lives.

We got dozens of responses from writers who answered our volunteer announcement on VolunteerMatch.com. In fact, the response was overwhelming, and we had to take the announcement down after just a few days."


You should also be aware that the media are looking to hook their audience as surely as you are looking to hook the media. For human-interest stories of good deeds or with good outcomes, this can be a very helpful thing. But understand that the media may also find a less than flattering angle, particularly if there is controversy surrounding some aspect of your condition or the research or treatment for it. Understand that the media usually illustrate controversy by focusing on two extreme and diametrically opposed opinions—and this could create a negative impression for your organization or your condition. Know what your interviewees will say, and work with all members who have media contact to agree on a strategy for that contact—a party line, so to speak. You may want to have a half page of "talking points" about the condition and your organization for the person being interviewed. Keep in mind that the media organizations are all in business to make news and not necessarily to educate the public or fulfill the goals of your organization.

Creative Ways to Get Your Message Out

Wendy Hubbard
PXE International

"Also look for any related story or letter in popular magazines and newspapers. When Prevention Magazine ran a story on the importance of walking to ease cramping in calves caused by low blood flow, PXE International wrote a letter, and asked my permission to submit it with my name as the author. The letter thanked the magazine for the article and mentioned how I had sent it to PXE international to tell them how great Prevention Magazine is. The result for PXE International was 10 new members—all of whom read the article and learned about us!"

Press Release Service

Question: How does your organization send out press releases? Are there services that offer this free of charge? Have your organizations ever paid for a service?

Answer: We pay for a VOCUS service, which is part of PR http://www.vocus.com/pricing/#compare

We are allowed distribution of five press releases a month, social media monitoring, some help with writing and pay $2,500 per year. (Please don't reveal our rate to them) It is a wonderful option as we do all our own work ourselves whenever possible and very seldom hire consultants or pay for services. We needed something semi robust since we have a large undiagnosed base. What is VERY important is to do some extremely hard negotiation with companies such as this as they will try to sell you their biggest PR kit, which most likely won't be used. You never want to use PR extensively, just when there is a major event or when you make news about the organization. If your organization is anything like ours, we are very tight with the dollar…and tough negotiation is absolutely essential to get twice as much with so very little.

When writing our press releases, we do pass them by those in our base who are journalists, so they can clean them up for us. The social media aspect is so very important because that also shows up on Google … to keep it fresh every single day… as far as the website, put as many relevant links as you can so you can be in the top five discussing your mission!

Pre Publicity Considerations

Be sure to assess the type and amount of publicity your organization wants. Research your possible avenues carefully. Here are some good resources and points to consider when starting to plan:

At times your organization may receive requests from individuals who are fundraising for a specific person, or for personal expenses. While there are some nonprofit organizations, such as HelpHopeLive, whose mission is to aid families with covering their own medical expenses by raising philanthropic dollars, there are many organizations that may feel this could result in the loss of their 501(c)3 status and the misrepresentation of their mission, logo, or website. However, there are ways to protect your organization’s mark. For example, Genetic Alliance and PXE International keep their marks protected for free by using the trademark website TEAS.

Publicity Opportunities

Several groups have been approached about being featured on a program entitled "INSIGHTS," a show hosted by Hugh Downs and aired on Discovery Health. Many groups report that after talking with individuals associated with the program, they learned that groups are asked to pay ~$22,000 to $25,000 to be featured.

[This paragraph submitted by Dean Suhr, MLD Foundation Oct-09 In short, Insights offers to produce a professional video and then have 400 national TV placements on Discovery Health, PBS, CNBC, Fox News, CNN, etc. But each market is one placement so your piece will likely play only once to a given audience. You are essentially left with a very expensive professional video. Probably not a good cost/benefit ratio for most foundations. They were careful with me to describe PBS as a potential distribution channel, not an affiliate - others have described being told they were part of PBS. You can see the sales documents and contracts on their website: Insights, click on the Medical Picture (upper left), Scroll down the left column and click on the "Special Invitation" key and enter Username: guest Password: 2009

A response from PBS (who the program claims it is affiliated with) stated:

PBS is not affiliated with this program.

There is some information about companies making similar claims or offers to the one you received under the Frequently Asked Questions section of the PBS Web site. Scroll down to the heading “Other Frequently Asked Questions.” You’ll see several questions regarding situations that are similar to the one you described in your message.

Here is the answer PBS posted:

PBS wishes to clarify that it is not associated with and does not endorse, distribute programming for, review underwriting for or otherwise have any business relationship with the following production companies: VM Television, Vision Media Television, Paradigm Media Group, PMG, PMGTV, Infinity Media Group, Roadshow Productions, Family Television Studios, United Media Communications Group, American Review TV, Business Break TV, Event Media TV, or Global Television Studios. PBS does not oversee the production or distribution of any programs associated with any of these companies.

If you are solicited by a production company that claims or implies an association with PBS, please notify PBS.

Public Relations

Good public relations (PR) is key to getting upcoming research and advocacy viewpoints into a wider professional and public arena. Some forums for PR projects may focus on community newspapers, setting up and managing social network sites (Facebook, Twitter, Volunteerspot, Foursquare, Youtube, etc.), press releases about your research or upcoming events, and documentary style interviews with key participants and staff. These help you share what is going on within your organization while also opening the dialogue between the members of the public and specific field.

Assembling a PR team, whether it is through a student run university organization/class or a professional team can offer assistance with interfacing with the media. While student run projects can be a more cost efficient option because they are more likely to offer their services for free or at low cost, the time commitment they can offer may not support all of your organization's needs. You also may have to devote more time to informing them about your organization and making sure projects are wrapped up in a meaningful and useful way by the time their project concludes. Hiring a professional team allows you to devote less time to guiding them through the process as well as guarantees greater time commitment to support ongoing PR projects. The downside to hiring a team is that their services can be quite expensive. When deciding between your PR options, you must weigh the needs of your organization and the cost that it would incur, both financially and for those responsible for interacting with the PR agency.

National Awareness Days

Information on creating a national awareness day for rare diseases that do not already have an official day. National Awareness Day

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