"True Advocacy comes from Building Relationships" - An Interview with Judi Sohn
Posted by at Mar 27, 2008 12:31 AM CDT
Judi Sohn, C3 VP of Operations, at NTEN's 2008 NTC Conference
As many of you may already know, March is Colorectal Cancer Awareness month. And if you were at NTC last week, you saw Mom at Home’s Judi Sohn, Vice President of Operations of the Colorectal Cancer Coalition (C3), sporting her “Cover Your Butt” T-shirt. To bring readers a little more information about the issue, Judi graciously agreed to be the spotlight of our first Interview of the Month for Connection Cafe:
Why don’t you start by telling a little about the issue of colorectal cancer.
Cancer that originates in the colon or rectum (colorectal) is the 2nd leading cause of cancer death in the United States, for both men and women. It's a myth that colorectal cancer is an "old man's disease," as just as many women get it as men. Most colorectal cancer begins as a polyp in the colon, although not all polyps become cancerous. You can find more information about prevention and screening of colorectal cancer on our website.
Colorectal cancer caught in its earliest stages, before the disease has moved beyond the colon, can be treated effectively and cured in the majority of cases. However, once the disease has spread to lymph nodes and other organs, odds of long term survival go way down. Until recently, science made little progress in treating advanced colorectal cancer and patients whose cancer had spread to other organs typically lived no more than 6-12 months after diagnosis. My father survived just 9 months after he was diagnosed with stage IV colon cancer in 1998. Now, there are new treatments for advanced disease, including innovative surgery techniques for dealing with cancer that has spread to other organs. Patients are living longer, and some patients with advanced disease are being cured. Today my father could expect to live 2 years or more or even be cured.
Still, nearly 50,000 Americans will die of colorectal cancer this year. The statistics are improving, but they won't stay on that trend without continued attention. It's more than just research. We need more patients to enroll in clinical trials, so research can be tested. We need to make sure agencies like the National Cancer Institute (NCI), the Food and Drug Administration (FDA) and others are on the right track to keep progress against colorectal cancer moving forward and that they have adequate funds to do so. Patients need and deserve a seat at the table when it's their lives at stake.
What does the C3 organization do to help this issue?
C3 is about building a community of engagement around colorectal cancer. Some of our efforts include:
• The "Cover Your Butt" campaign started last year, in support of three bills in Congress that would guarantee access to colorectal cancer screening and treatment. You can read more about those bills here. Most colorectal cancer awareness campaigns focus on getting people to talk to their doctor about screening. Unfortunately in this country, there are many who know they should be screened, but simply can't afford it. Or, if they do get screened, they can't afford treatment. There are too many Americans who do not have adequate insurance to begin screening for colorectal cancer at the age of 50, and if they wait until they are eligible for Medicare at 65, it may be too late. On Wednesday, March 19th, we held a one-day phone blitz to Capitol Hill we called the "Congressional Butt-In." Despite our very limited budget for promotion, nearly 2,000 phone calls were made to Congress in one day in support of the bills in the Cover Your Butt campaign.
• Each March we hold a "Call-on Congress." We invite advocates from across the country to join us for a day of grassroots advocacy training, followed by a day on Capitol Hill in meetings with their Members of Congress that we arrange for them. We also work with our advocates to help them build relationships with their elected legislators and their staff. The advocates help us put a face on the issue. We're talking about a disease that affects real people that live and work in their communities. Congress needs to see that.
• We directly fund research through our "Lisa Fund," named after one of our founders who lost her battle to colon cancer last year. The first research grant will be awarded next month.
• Publicly-funded research focused on colorectal cancer is happening all over the country. We have a Research Advocacy Training and Support program that works directly with patient advocates - regular people, not scientists - who sit on the committees that design and evaluate that research.
What is C3 doing online to communicate, market or advocate to constituents?
It is much, much cheaper to engage online than through more traditional means. However, there are other factors that make our online communication essential:
• Many of our constituents are actively fighting disease. It is difficult for them to travel, even to a local event. But often they can get to a computer. And if they can get to a computer, they can email us. They can read our website and newsletters. They can take action online and make phone calls. If we only marketed to advocates we could reach in person, we would be missing a substantial part of our target market.
• Research changes quickly. Information we publish online on our Research News pages is up-to-the-minute.
• Some legislative alerts need fast turn around. For example, in 2006, we were told that then-New York Governor Pataki was threatening to veto passage of legislation that would provide treatment for those diagnosed with colorectal cancer through publicly-funded screening. In less than 24 hours, we sent an action alert out to all our New York constituents urging them to pick up the phone and call Governor Pataki's office. There wasn't even enough time for them to take action by email. The email we sent was quickly forwarded all over the state, and it generated hundreds of calls to the Governor's office. A few days later, the legislation was signed into law by the Governor.
What specific tactics and/or tools have you used to help with these online efforts?
What haven't we used? We got our 501(c)(3) status in October 2005. We signed a contract with GetActive two months later. So we have always been a very online-engaged organization. However, we don't limit ourselves to only what GetActive/Convio have to offer. We have utilized WordPress as the foundation for the majority of our soon-to-be-launched redesigned website. This opens us to that entire community of developers for the plug-ins and enhancements that will help our website do exactly what we want it to do. What's not in WordPress will be in Convio or Salesforce.
The Cover Your Butt microsite is hosted on WordPress.com and was up and running in under 48 hours for a total cost of less than $50.
We started using Salesforce as our main constituent database in Spring 2006. While GetActive gave us a very good retrospective analysis of how we were engaging with our constituents online, we were missing the big picture. Salesforce is better known as a tool for corporations and for-profit businesses. However, they have a Foundation that gives away up to 10 user licenses to nonprofit organizations. Beyond just donating licenses, the Foundation has employees that are doing an incredible job of making the tool really work for nonprofit organizations.
We recently started experimenting with Facebook to help spread the word about our campaigns. While the average age of the colorectal cancer patient tends to be a little older than the average Facebook user, we do find that the most active advocates are younger.
Internally, we are organized around the web, as half of our staff (myself included) does not work out of the main office. We manage projects using 37Signals' Basecamp. We review documents in Google Docs, we are constantly IM'ing each other. I've had better communication with my co-workers at C3 who are mostly 200+ miles away than I've had with co-workers where we've been 10 feet apart.
What results are you seeing online? And how have these helped augment and/or exceed offline efforts?
The New York legislation above is an example of how our online interactions made a quick difference. Beyond that, the best example is the Cover Your Butt campaign. Primarily focused online, we took that campaign to Capitol Hill on March 11th and to our Congressional Butt-in on March 19th. We can see that for every email sent out directly to a constituent about the campaign, it was forwarded and opened at least 5 times.
So far this fiscal year, online donations are on track to exceed mailed-in check donations for the first time. Some find it hard to believe that we have only been in existence for 3 years, as we have grown at a very fast pace. We started C3 in March 2005 with one consultant and one administrative staff member in a single room in Washington, DC. Now we have an office suite in Alexandria, VA a toll-free answer line and 7 staff members. We have a strong reputation both on and offline in the larger colorectal cancer research and advocacy community. Our ability as an organization to use emerging technology effectively has been credited as part of the reason for that success.
We truthfully don't draw a hard and fast line between on and offline efforts. Our focus is entirely on the message, and reaching people without reinventing the wheel or wasting money. If we can get people to a computer, we can provide them with information that we don't have to provide on paper. But we know that true advocacy comes from building relationships. That is why we bring our advocates together for trainings. We have monthly conference calls with them. It's the same with our donors. We are not playing a volume game. We are far more concerned with our level of engagement with both donors and advocates than we are with just spouting out numbers.
If you could give another nonprofit advice about using the power of the Internet and Web 2.0, what would it be?
If you limit yourself to only considering tools designed for nonprofits, you may be missing out. We're focused on what the tool can provide, not the tool itself. The best technology gets out of your way quickly.
Don't be afraid to give up a little control of your message in exchange for the possibilities of opening a dialogue around your issue. Use a tool that allows visitors to leave comments on your site content. Use RSS so other sites can syndicate your content as the National Colorectal Cancer Roundtable does with ours. Publish your photos using a sharing site like Flickr or SmugMug. Urge your constituents to use Twitter and their Facebook status to talk about what you're doing. You can try things online that would be more difficult and costly to do any other way. We launched Cover Your Butt for under $50, and now the impact of that campaign is being felt throughout Congress.
C3’s work includes not only communicating with constituents, but also asking them to advocate on issues of importance with elected officials and asking them to support the organizations financially; how do you balance those needs and are you seeing your constituents both advocate and donate?
When people first come to C3, oftentimes they aren't looking to become engaged in a cause, rather they are looking for information that will help them or their loved one navigate their cancer diagnosis. We're there for them with up-to-date, patient-friendly, unbiased information. Through our advocacy work, we also help them see how they can work with us toward a world without colorectal cancer. It's a very hopeful message, and for many who are facing their own mortality, it also touches on a desire to create a legacy. In fact, we have several advocates, who, when the cure for colorectal cancer comes, we will point to and say, "They made this happen." Our donors are advocates who want to invest in such a world.
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