Case Study: IDEA League, Stephen Hollister

Background

The International Dravet Syndrome Epilepsy Action League, or IDEA League, is a nonprofit organization run entirely by volunteers. The League was founded in October 2005 by parents of children with a severe form of epilepsy known as Dravet Syndrome. This rare disease is a catastrophic disorder that involves violent and unexpected seizures without warning. The League is dedicated to the early diagnosis, appropriate treatment, and cure of the disease.

Motivation and Benefits

Stephen Hollister is a volunteer with the IDEA League who works by day as a grantwriter. And like many of the other volunteers for the League, he has a daughter with Dravet Syndrome.

In January 2008, he read about America’s Giving Challenge in the Chronicle of Philanthropy. It seemed like a great opportunity for the League, except for a few problems. Between his full-time job, his commitment to the League, and caring for his daughter, Stephen didn’t know if he had the time to commit to the Challenge.

In addition, he knew how to raise money from foundations and to write a compelling story, but he had no experience asking individuals to give to a cause. And lastly, there were only eighteen days left in the competition.

Given these obstacles, Stephen did what so many people who believe passionately in their causes did during the Challenge; he closed his eyes, took a leap of faith, and jumped in.

Convincing His Group

“I went home after reading the article at work,” Stephen says. “I created the badge after I put my daughter to bed.” He then posted the opportunity on the family forum on the League’s website. It was met with equal amounts enthusiasm and skepticism. How do we know this is legitimate? How do you know they are what they say they are? How can I ask my friends and family to give to this when I don't know what it is?

Stephen patiently answered all of their questions and concerns. “I pointed these people to the Case Foundation and Network For Good websites and PARADE Magazine,” he recalls. “I posted the Chronicle article. I listed the partners and convinced people that these were legit. I invited them to check for themselves and also sent a Guidestar link.”

Finally, he called the founder and executive director of the IDEA League, Joan Skluzacek (who also has a child with the disease), and advocated for the League to participate. “ Because we have a relationship, she trusted me,” Stephen says. “She posted an endorsement the next day and it helped a lot.” Ultimately, Stephen’s information and enthusiasm won out, and the League agreed to participate in the Challenge.

Discovering the Power of E-mail

Like many other cause champions, the Challenge was Stephen’s first foray into using online tools beyond e-mail. In his words, “I don't use any of those tools. I use email. No Facebook, no social networking. This was my first foray into web 2.0. I learned what widgets were all about.” And as the donor survey data indicates, many of his donors were also new to these tools, with only 3% having made an online donation prior to the Challenge through an online social networking site.

Stephen began by writing and sending an e-mail that included his daughter Serena’s picture and story to family and friends. Then he realized that it would be strange for other parents to send out a message that included a photo of his daughter. So, he removed his daughter’s photo and encouraged his contacts to use their own photos to make the story more personal. This was the first step to other League members “owning” their involvement in the Challenge.

In fact, volunteers' ability and willingness to customize the fundraising appeal and use it was reflected in the donor survey data. Ninety-five percent of donors to the IDEA League’s Challenge effort said that they contributed to support a family member, friend, or colleague based on the personalization of the e-mail.

“That’s it,” Stephen thought, “I’ve done what I can.” But he soon learned that he had just begun. One e-mail turned into two, three, a dozen, and more. According to Stephen, “I spent hours and hours on this. I didn't track the time.”

There were five or six core volunteers and another twenty or so who helped to raise funds. Stephen soon became the cheerleader-in-chief and chief technology officer for their effort. He encouraged people to send out their own e-mails, thanked his donors and volunteers often, encouraged others to do the same, and recruited more volunteers to participate.

Learning the Power of Personal Asks

And then it happened, that magical moment when Stephen realized that something extraordinary was happening. Technically, according to the donor survey, what happened was that the majority of donors were asked by a friend, colleague, or family to donate, but a much smaller percentage were asked by Stephen to give.

In reality, Stephen says, “I began to get e-mails from people I didn't know. These people were forwarded the story.” And soon they were off and running with a viral fundraising effort.

Stephen soon learned that having a personal connection with donors was very important. For example, ninety-five percent of the donors mentioned on the survey that they gave to support a friend or family member. Even if Stephen shared his e-mails as models with volunteers, each volunteer had to tap into their own personal networks where they were already known, loved, and respected to make their case for giving and share the personal toll of this disease on their children and families.

As Stephen recalled, “If I walked up to strangers who didn't know the disease or me, they would decline. If a friend called them and asked them, that person would be more likely to give to that person. I couldn't have won this contest if we didn't have the personal connections and expanding circles.”

Leveraging Different Media for Greater Results

As the effort unfolded, Stephen became more creative, encouraging people to send out reminder e-mails, asking others to post on their blogs, and creating e-mail signatures that linked to the badge. He also encouraged people to think creatively and expansively about the different social networks that they could tap to raise funds, and ways to personalize the pitch in their emails.

Near the end of the campaign, IDEA League created a phone tree to solicit donations. They divided up names of potential donors and had volunteers call them and recruit additional volunteer fundraisers. Stephen was in charge of calling fifty potential donors in California, Oregon, and Washington.

Volunteer Response

Individual volunteers across the country were extraordinarily willing to spend their time and energy on the Challenge. “The competition became their lives,” Stephen says. “A lot of people worked the phones. It was amazing. They talked about it at church, posting questions, posting encouragements. They spent hours and hours on this.”

A pediatrician in Texas with a child with Dravet Syndrome took a copy of the fundraising appeal with her to a local restaurant and asked people there to donate. A school principal inserted a flyer about the Challenge in every child’s folder. One superstar volunteer managed to get her daughter’s photo and the logo for the Challenge on a commercial fishing boat. She alone ultimately brought in six hundred donations.

And they all watched, carefully and continuously as their success began to show up on the leaderboard. One volunteer posted on the League’s online forum, “My husband never touches the computer. And, now when we get home I have to race him to the computer because he wants to check the leader board!”

Overcoming Obstacles

But there were challenges too. Out of necessity, Stephen became the chief technical supporter for the network. “I gave them the code for creating the badge on the web site,” he recalls. “Got people to put the badges on their web sites, got people who were involved with Facebook to put the badges on Facebook, too.”

Stephen created screen shots and made up instructions that he circulated among his volunteers—for example, how to avoid a pop up blocker. “We had a lot of people who were not technically savvy,” Stephen says. “They didn't know what browser they were using. That was the least enjoyable part for me.” That said, his efforts paid off as eighty-two percent of his donors said the process of making an online donation to the cause during the Giving Challenge was simple.

Donors giving from overseas were also problematic as the donation forms didn’t allow for foreign zip codes. They ultimately figured out how to make this work with the help of Network for Good, and then shared the solution with other potential donors overseas. The League has archived all of their technical support materials and solutions for use next time.

The fact that Dravet Syndrome is not well-known was a challenge as well. This necessitated a significant amount of time spent educating potential donors on the disease. Again, though, this investment proved valuable: Sixty-one percent of the donors said they learned something about the Cause during the Challenge.

Was It Worth It?

In the end, everyone was exhausted – and exhilarated. Stephen and the other volunteers knew it was all worth it. They raised $62,746 from 2,634 donors, plus the $50,000 grant funds. And more money kept trickling in by snail mail ultimately totaling about $75,000 from individual donors.

Just as important as the money, however, according to the survey, was the fact that about fifty-seven percent of the donors were new donors – which meant that many probably learned about Dravet Syndrome for the first time.

Indeed, the goodwill and awareness generated by the Challenge for the IDEA League seem likely to continue in the future. Sixty-six percent of the donors report they are likely to make a donation to the Cause again in the future, and an almost equal percentage say they are likely to tell others about the Cause.

Donor Profile

Demographics

Charitable Giving Behavior 

• 69% had made an online donation prior to making an online donation to the Cause during the Giving Challenge.
• 86% had made an online donation through the website of a specific charity or organization.
• 3% had made an online donation through a social networking site.
• 4% had made an online donation through a charity badge, widget, or SixDegrees.org.
• 5% had made an online donation through other method.
• 88% frequently or sometimes donate to causes/organizations.

Relationship to the Champion and to the Cause     

• 52% were aware of the Cause before they were asked to make a donation.
• 43% were had donated to the Cause prior to the Giving Challenge.
• 31% had volunteered time to the Cause prior to the Giving Challenge.
• 44% were asked by a friend to donate to the Cause, although only half of donors were asked by the Champion.

Q: By what means were you contacted and asked to donate to the Giving Challenge?

Q: Which of the following best describes your relationship to the person who asked you to make a donation?

Q: Was the person who asked you to make a donation to the Cause the person who was ultimately competing the Giving Challenge?

Motivations and Barriers

Why they donated

• 95% said to support my friend, family member or colleague in the Challenge.
• 76% said the work of the Cause.
• 50% said I have a personal connection to the Cause.
• 60% said the ease of making an online donation.
• 47% said the amount requested was minimal.
• 25% said knew many others were donating.

Barriers 

• 82% agree the process of making an online donation to the Cause during the Giving Challenge was simple.
• 6% agree they had technical difficulties when making an online donation to the Cause during the Giving Cause.
• 66% agree it is easier to make donations online than it tis o make donations offline.
• 18% agree that they had concerns about the security of online donations.

Giving Challenge Impact

• 66% are likely to make a donation to the Cause in the future.
• 35% are likely to volunteer their time with the Cause in the future.
• 62% are likely to tell others about the Cause in the future.
• 61% learned something about the Cause during the Challenge.
• 80% feel their donation during the Challenge had an impact.
• 59% prefer to donate online rather than through another method.
• 6% joined an online social network as a result of the Challenge.