Voters Put Special-Needs Groups in the Members Project Top 25; American Express Kicks Them Out

American Express has wiped out Fragile X syndrome!

Unfortunately, it's not the genetic condition itself that was wiped out. It was a chance to help cure it through the credit-card giant's Members Project.

On a site topped with the slogan "Your Ideas. Your Decision. Our Money," American Express invited members first to provide an inspiring project idea, then to urge supporters to vote for it. Five still-to-be-determined finalists will split $2.5 million to bring their projects to fruition.

Cure Fragile X, with a goal of funding research into the most common cause of cognitive impairment, had reached number five in terms of votes cast by American Express cardholders and other site visitors by the time of the semi-finalist selection. Supporters assumed it was a shoe-in for the Top 25.

But when that list was released on September 9, Cure Fragile X was not on it.

Neither was Reece's Rainbow, an organization that seeks adoptive homes for children with Down syndrome in international orphanages. Coming in at #24 in total votes wasn't enough to get those orphans on the Top 25 list.

Supporters of both projects, who exerted extraordinary effort to bring in votes for their projects, are left wondering what part of Your Decision they didn't understand.

Recalls Holly Roos, who has two children with Fragile X, "I sent e-mails to everyone in my e-mail contact box, told them about the project and how easy it was to vote. I asked them to forward it to everyone in their contacts as well and then included personal information about what Fragile X is. The Fragile X community pulled together along with all of our friends, family and with the support of people we didn't even know, we were ranked number five in the votes. We followed the votes very closely and continued to encourage everyone to reach out for votes."

Katie Clapp, president and co-founder of FRAXA Research Foundation, a parent-powered organization that was not formally linked with the Cure Fragile X project but got out the vote for it, wrote to disappointed supporters:

Today is the day we have been anxiously awaiting -- the decision of the American Express Advisory Board on the Top 25 Projects. Thanks to your voting and spreading the word to vote during the month of August, our project ranked #5 in nomination votes out of nearly 1,200 projects submitted to the 2008 American Express Members Project! What a show of support!

However, despite our high number of votes, the project was not selected to advance to the next round of voting and possible funding. Quite a few top-ranking projects were not selected and they appear to have in common that they were medical research based (vs. buying supplies, building an infrastructure). We have not been given any information on the criteria, so we can only guess at the reason.

Andrea Roberts, executive director of Reece's Rainbow, was anxiously awaiting that Top 25 announcement, too, even getting a page with pictures of all the waiting children ready for the increased exposure. "I just couldn't believe what I woke up to on Tuesday morning," she says. "There are a lot of angry people on our end right now, supporters and adoptive families. They feel very deceived and misled and like they spent a lot of wasted time just to increase AmEx's number of cardholders."

If this were last year's Members Project, the two groups might still be pushing their projects toward a windfall reward. The press release for the 2007 version specifically says that "Based on popular vote, the top 50 ideas will be narrowed to the top 25 ideas."

This year's release, however, makes it clear that Your Decision only applies to the final one. Under the heading of "Experts on Making a Positive Impact," it states, "To help vet project submissions and narrow the field to 25 semi-finalists, American Express has established the Members Project Advisory Panel, a roster of thought leaders and experts in arts, community, education, the environment and health. Panelists will review and vet projects for those that are innovative and achievable with a broad, positive impact, and Cardmembers will ultimately vote on the winning project."

An online FAQ echoes that, explaining that "The project should be innovative, achievable, and impactful. It should also have been nominated by others, discussed positively on the Discussion Board, and/or promoted to friends and family members using the communication tools on the site. The 12 member Advisory Panel will evaluate the projects in conjunction with American Express to determine which projects progress to the Top 25 voting round."

So apparently curing Fragile X and giving homes to orphans with Down syndrome were thought by the thought leaders to be insufficiently innovative, achievable and impactful. Or maybe they just weren't sexy enough. "One parent called AmEx and was told that there 'wasn't enough buzz' about that project," Clapp reports. "We don't understand that, given that there were over 17,000 views of the Cure Fragile X Project. That's a huge number -- just about number five in the rankings, as were votes for this project."

You have to wonder what projects won the popular vote last year that forced American Express to switch to committee rule. It seems to go so strongly against the spirit of the Members Project, and AmEx's own self-interest. Presumably one of the goals of this whole thing, in addition to the do-gooding, is member-getting and e-mail-address-gathering. To succeed at that, you have to inspire people -- with slogans touting empowerment and big boxes that say Vote Now! -- to beg all their friends and acquaintances to come and be counted, leaving small bits of personal information behind. You need people to make the kind of fervent and good-faith effort that the supporters of Cure Fragile X and Reece's Rainbow made.

To then turn around and say, "What? We never said your vote would count" seems, at the very best, a cruel kind of bait-and-switch.

"I feel terribly misled and deceived by American Express," says Becky Zorovic, a parent of Fragile X children who was involved in the Cure Fragile X project. "AmEx says 'Your Ideas. Your Decision. Our Money.' I do not see where this was anyone's decision other than the AmEx advisors. If they are using some system to decide who gets into the Top 25 other than the votes, which is what they promoted, they should be much more transparent about their process."

For those willing to give the Members Project another chance, there are two projects among the buzz-worthy 25 that may be of particular interest to families of children with special needs: Project Brain Child, which "proposes to conduct a feasibility study to create a National Pediatric Genomic Brain Tumor Registry"; and My Little Waiting Room, which will "bring drop-in child care to the hospital so a lack of child care will never get in the way of medical care." Others among the chosen projects address social and medical problems of the developing world, with the thought leaders showing a particular interest in trafficking, hunger, and poverty.

Undoubtedly, there are worthy causes in the adjusted Top 25 from which to choose. But if your heart's still in curing Fragile X or promoting adoption, you don't need American Express's endorsement to show your support.

FRAXA has a fundraising page of its own, and so does Reece's Rainbow. Forget AmEx's fancy-pants communication tools, and vote with your own humble pocketbook.

That's one way to show 'em. Another may be to take the advice of Elaine Stillerman, a member of the FRAXA Council of Advisors:

"I think card burning is in order!"

Update: More special-needs charities dropped from the Top 25

Read more: Special Needs News | Site of the Day | Get Involved