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Finding Hope in a Cause

July 25, 2013

(Derrick Feldmann is CEO of Achieve, an Indianapolis-based creative fundraising agency. In his last post, he argued that the annual report is yesterday's news.)

Feldmann-headshotFive years ago I joined with a few others to start Achieve. During the formation process, I looked into obtaining "key man" insurance, which provides financial relief to a company if something unexpected happens to one of its key leaders.

As with any life insurance policy, I had to pass a physical exam and submit to a battery of blood tests. A week after the exam, my insurance agent called to discuss an "odd reading" from one of the tests that pointed to an anomaly in my liver function. He then told me it could have been caused by me having a drink or two the night before. When I assured him I hadn't, we agreed it was a fluke.

A few days later, after visiting my doctor and submitting to another blood test, my insurance agent called me with some perplexing news. "I know this sounds crazy," he said, "but your liver enzymes are high again and the underwriter won't insure you." He then suggested I get a note from a doctor saying the test result was incorrect and that I was the picture of good health.

I waited a couple of weeks but finally went to see a specialist. While he was flipping through my medical records and charts of my blood work, he looked at me and asked, "How long have you been scratching your legs?"

"What?" I must have looked confused.

"Did you know that the whole time I've been sitting here going through your records, you've been scratching your legs?" Then he pulled up one of my pant legs. There were scratch marks all over my leg. I hadn't even realized I was doing it.

A couple of weeks later I had minor exploratory surgery. After the procedure, he sat me down to confirm what he had suspected: I had a chronic condition called primary sclerosing cholangitis, or PSC -- an autoimmune disease that causes inflammation and subsequent obstruction of the bile ducts. The itching was caused by bilirubin, a byproduct of normal metabolic processes, that had entered my blood stream because my bile ducts were completely closed.

I left his office in a panic. I needed answers, from people who had been diagnosed with the same disease. When I got home, I scoured the Web for information and eventually found an organization called PSC Partners.

I couldn't believe it. I devoured everything on their Web site -- newsletters, conference programs, articles -- and printed out things that would help my wife and family understand more about PSC.

I didn't realize it at the time, but what is most important to me changed completely at that moment. I don't mean to suggest that I lost interest in my community or other things that previously had interested me. But from that moment on, I focused more and more of my energy on helping other people who have PSC and are looking for support and help.

That's how philanthropy often works. Sometimes events in our life cause us to rethink what we have been doing and what is important to us. Not because we no longer care about things that previously were important to us, but because we have been confronted by new challenges which demand that we act -- and sometimes give -- differently.

I was greatly impressed by PSC Partners. They did their best to answer all my questions at a time when I badly needed reassurance and support. Here are some of the other things I've learned from this all-volunteer group:

Design isn't the most important thing in the world. Anyone who visits the PSC Partners site is likely to note its straightforward, rather dated appearance. Given Achieve's work with fundraising and millennials, you can imagine my initial reaction. But after spending a few minutes on the site, I realized it didn't really matter. When you're interested in a cause for personal reasons, what you most want is information. If an organization's Web site has great content, you'll overlook things like whether it's "pretty" or not. On the PSC site, the Understand Your Diagnosis section and the personal stories in the Keeping It in Perspective section are terrifically helpful and moving. No, the site won't win a Webby, but the organization will win donations from people like me who really appreciate all the information and support it provides.

Sometimes laughter is the best medicine. One of the best sections of the PSC site is called PSCers in their 20s and 30s. When I found it, I read through it from top to bottom and enjoyed every minute -- not least because the person who wrote it had a sense of humor. For instance, this line: "PSC doesn’t mean Please Skip Clubbing, it just means Please Sip Cautiously." Or this section about dating and telling your girlfriend/boyfriend about PSC:

Some PSCers like to be open from the beginning so they don't get attached to someone who "just can't handle the truth"....Other PSCers don’t want to put it all out there right at the start. There's no wrong choice. For many, the third date is now known as THE date -- and not solely for the classic reason. The thing is, unlike Jeopardy or Wheel of Fortune, there is no right or wrong. If you're not comfortable until your 8th or 9th (date, probably not month) then that's okay, too....

Okay, some may find this hokey, but for me, at that particular point in time, it was a breath of fresh air.

There's no place like home. The first words below the big Flash animation on the PSC homepage read: "If you're living with primary sclerosing cholangitis (PSC), we're glad you're here."

A statement like that pretty much guarantees that people like me, people looking for help and an advocate for their cause, will know they've come to the right place. It also reinforces the "high touch" aspect of nonprofit work that is one of the hallmarks of our sector.

Take a look at your organization's Web site. Does it offer messages designed to assure visitors and potential donors that they've come to the right place -- a place where they not only will find the information they’re looking for, but might even make friends and, perhaps, have their lives changed?

My point here is that while good Web design and usability are important (see my previous post on the topic), they often are overshadowed by the very personal nature of the situations that our constituents and donors are going through. Engaging content doesn't have to be whiz-bangy to keep us wanting more -- and, at the end of the day, that's what we hope all our potential constituents and donors want.

So, take some time to review your Web site from the perspective of the first-time visitor or donor. Does it welcome them right up front and make them feel like they've found a friend and advocate for their favorite cause? Is the content behind the homepage consistently engaging and informative? Does it use humor in appealing ways? If not, maybe it's time to take a lesson from PSC Partners.

-- Derrick Feldmann

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