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Christopher and Dana Reeve Foundation

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Issue Advocacy, Strategic Planning, Media Relations

CHALLENGE

Christopher Reeve of Superman fame was convinced that more than 250,000 people were living with spinal cord injury. Furthermore, his foundation’s quality of life division was hampered in its efforts to provide services to paralyzed Americans by a lack of precise statistical information.

After Reeve’s death in 2004, the Christopher and Dana Reeve Foundation embarked on a five-year effort to determine exactly how many people in the United States were living with paralysis and spinal cord injury. The Foundation partnered with the University of New Mexico School of Medicine’s Center for Development and Disability to design the survey tool and conduct new research using a telephone survey of over 33,000 households in the United States – the largest known disability survey ever.

The findings were stunning. One in 50 American live with paralysis – over a million more than previously realized. Of these, there are more than five times the number of people with spinal cord injury than originally assumed – 1.275 million – roughly the same as the population of Philadelphia.

Despite the vast data set and the credibility of both the University of New Mexico and the Christopher and Dana Reeve Foundation, getting the word out faced a number of challenges:

• Because the foundation is invested getting research findings from the laboratory to treatment as quickly as possible, they did not want to wait for the glacial pace of peer-review publication to release the data. It was necessary, however, to preserve some aspects of the research for future peer-review publication later in the future.

• Despite the University of New Mexico’s and the Christopher and Dana Reeve Foundation’s excellent credentials, the stunning findings required a national research source of unimpeachable credibility for the elite media to believe them.

• Because the survey is a large, complex data set, it was outside the “vocabulary” of the typical newspaper editor or television producer.

• Finally, the entire process uncovered a dirty little secret: Many health statistics are inaccurate. Reeve feared there might be some blow back from other disability groups or disease organizations whose numbers might be called into question by these survey results.

RESPONSE

Turner first worked with the foundation and UNM’s principal investigator to determine how to best message and package the findings. Next Turner recommended that Reeve develop a report that laid the story out for the media and explained the extensive third party participation for the research, namely the paralysis task force, the CDC. This report also laid out policy and funding implications for the larger population.

To avoid a sense of hopelessness, Turner incorporated tales of personal triumph over seemingly insurmountable obstacles. Showcasing individual battles against an ineffective health care system, Turner found stories that illustrated “penny-wise and pound-foolish” health care spending and showed how early medical interventions, ongoing therapies and day-to-day supports would allow people to live active and rewarding lives despite their paralysis.

Drawing on its experience with large regulatory agency announcements, Turner used a variety of tactics to make sure those closest to the issue were well informed about the data without compromising overall coverage. The approach allowed Turner to fully explore and address any concerns in advance of the public release and allowed the spinal cord injury community to fully participate in the announcement.

Turner also developed the detailed report and prepared paralyzed people willing to talk to the press. Their stories were pre-produced on broadcast quality video and posted on the Internet to give reporters individualized accounts that supported the finding’s main messages.

Finally, Turner executed its release strategy, which included allowing reporters to run “curtain raiser” stories the morning of the public release of the data, which involved a press conference with Reeves’ children announcing the release of the data with to help gain additional coverage, especially from outlets that could write the story in advance.

The blogosphere was also targeted. Turner aggressively pursued the blog pages of mainstream news organizations and treated key health websites like any other news outlet. Turner also reached out to the hundreds of health and disability blogs that were deeply interested in the topic.

RESULTS

Turner achieved saturation media coverage; overall media impressions were in the neighborhood of 50 million. All of the major newspapers, networks and blog sites covered the story, with multiple placements in some outlets. ABC’s “Good Morning America” was allowed to ”break” an interview with Christopher Reeves’ daughter. Other live segments followed on CNN, Fox News and Univision. In addition, stories using the pre-produced personalized stories and local interviews with paralyzed American ran on nearly 100 stations across the country.

As important, the survey was received without a murmur of controversy by the disability community. There were hundreds of blog placements about the data. The Centers for Disease Control said at the press event that is was a model that should be replicated in other fields.

As for legislative goals, during this activity the Christopher & Dana Reeve Act was passed. The foundations lobbying goals vis à vis health care reform and other disability efforts are underway.