More Special-Needs Projects Dissed by American Express

Eosinophilic Esophagitis.
Fragile X Syndrome.
Prader-Willi Syndrome.
Type 1 Diabetes.
Spinal Muscular Atrophy.

Five disorders that affect children. Five pleas for research money through the American Express Members Project. Five projects that made it into the top 25 according to number of votes ("nominations") received, with more than 2,000 each.

Zero projects that made it in to the actual Top 25, as chosen by an American Express advisory panel.

The fact that votes didn't count in determining the Members Project Top 25 -- only the final five, and then the top three -- is something I wrote about here a couple of weeks ago. Advocates who had gotten out the vote for "Cure Fragile X" and for "Reece's Rainbow" (which facilitates the adoption of children with Down syndrome in foreign orphanages) were not happy to find out that they had urged friends and relatives to vote for nothing, especially since prospective voters had to give personal information to American Express.

Although the site FAQ does specify that votes don't determine the Top 25, the site design overwhelmingly conveyed that impression. One Fragile X project supporter has characterized the Members Project as a scam. But others who put in the effort for high vote-counts said they knew what they were getting into.

"The rules are clear that the advisory committee would make the final selections," said Wendy Book, MD, vice president of the American Partnership for Eosinophilic Disorders. Her organization helped get out the vote for "EE - Save Sick Children," a project that had 6,720 votes, the second-highest among all projects.

Book acknowledged that some of those who voted so enthusiastically may not have chosen to read the rules. "Our community rallied to support this project and I know they are disappointed. For a small organization like ours, the money could make a huge difference to our community. We do a lot with very little."

Still, she wasn't surprised to find EE left out of the Top 25. "The contest favors global projects, not disease specific ones. Although, I would argue that the disease group we represent is a growing problem globally and thus should have been considered."

Also expressing disappointment was Craig Polhemus, executive director of Prader-Willi Syndrome Association (USA), one of the organizations that helped solicit votes for the project "Fight Obesity With a Cure for PWS," which was the 16th-most-nominated with 2,685 votes.

"It is regrettable that the 'Fight Obesity with a Cure for PWS' project, despite its high finish among nominated projects, was not selected to advance," said Polhemus. "We would have preferred that Members Project officials recognize the overwhelming degree of support from a rare disease community by including it, as well as other highly nominated projects, among those projects selected to advance."

As to whether supporters understood the rules, Polhemus added, "Some of those who supported the project had closely read the description of how the 25 projects were selected to advance. A great many others expected that scoring within the 25 top-nominated projects was what it would take to be among the 25 projects advancing to the next stage."

Is it American Express's problem that people didn't read the rules? I don't know that I'd go so far as to call it a scam, but the site design did tend to reinforce the impression that voting was the way to "help" your project win, and there were no highly visible disclaimers to warn that such help was to be only one of many factors in the semifinal selection. The fact that those wishing to add their nomination to a project had to provide personal information to register contributes to the impression that the Members Project tricked people into voting when voting was not a deciding factor.

Further complicating matters is the fact that last year, the advisory panel picked the Top 50, and voters the Top 25. This year, there was no Top 50, and the advisory panel picked the Top 25. Voters will determine five finalists, to be announced on September 30, and then support their favorites among those five, with each to receive a share of a $2.5 million total based on votes gained. The recipients of the top three prizes -- $1.5 million, $500,000, and $300,000 -- plus two $100,000 consolation prizes will be announced "on or about" October 14.

I asked American Express spokesperson Leslie A. Berland for some comment on the confusion that project supporters experienced over how the selections were made, and she sent me this statement:

Throughout the Members Project we actively review and listen to participant feedback to best understand what parts of the program work well, where we can build upon elements of great interest and excitement, and where and how we can do things differently for programs in the future. We greatly value our Cardmembers' feedback which is key in helping shape our programs.

The selection of the 25 project semifinalists was based on a variety of factors, including the number of nominations received and other metrics of support and interest in the projects, a review of achievability, innovation, and broad, positive impact by our Advisory Panel, and the confirmation of an appropriate fulfilling organization for the project.

In case you're wondering what meters and liters have to do with choosing a winning project, I checked with Jennifer Kyrnin, About.com's guide to Web Design / HTML, for a quick definition of what "metrics" means in the world of Web marketing. "Metrics are how you measure the success of a Web marketing campaign," she told me. "Depending upon the goals of the campaign, this might be the number of clicks to a specific Web page, the number of clicks on the call to action of the Web page, or some other measurement."

In layman's terms, I'm pretty sure that means "stuff we don't want to have to explain."

It doesn't seem to me to be a very satisfying explanation, or one that particularly respects the incredible amount of effort put in by parents to send voters to the Members Project site. I think perhaps the advisory panel underestimated the amount of progress that could be made in research on these disorders with the amount of money it had to offer, and the amount of impact those discoveries might have.

Still, there are some bright notes to this disappointing Members Project cycle. One project centered on research into a childhood medical problem did make the cut for the official Top 25 -- "Project Brain Child," which "proposes to conduct a feasibility study to create a National Pediatric Genomic Brain Tumor Registry." If you've still got the will to vote in the Members Project, lend your support to this effort to treat pediatric brain tumors.

And even though these other projects didn't survive, the fact that they made such a glowing showing has got to be encouraging. To see things like EE and Fragile X and PWS at the top of the vote counts is really rather thrilling -- a testimony to the rallying power and passionate support that parents of children with special needs bring to their causes.

In addition to the possibility of much-needed funds, programs like the Members Project offer an opportunity to increase awareness, both by prompting us to represent for our children's disabilities to friends and neighbors, and by getting our projects up in the list where they will be seen and investigated by others.

As Polhemus mentioned, "Because Prader-Willi syndrome is classed as a rare disorder (though it is the most common known genetic cause of life-threatening obesity), we were extremely proud that families, friends, and others who were made aware of the condition responded so disproportionately to urge funding of this initiative. This opportunity to coalesce around a positive prospect for funding gave many families and friends a chance to be involved in a creative fundraising prospect."

On that positive note, I'm going to take the opportunity presented by the Members Project here to celebrate the special-needs-related projects that reached the Top 25 in voting but did not make the semifinalist list.

Starting on October 6, I'll be profiling each of these high-vote-getting projects, with information on how you can bypass AmEx's deep pockets and donate yourself. I'd also like to share some of the great stories of parents who supported these projects, what they would like to see funded, and how it would change the lives of their children. If you have something to share about any of these projects or conditions --

• "EE - Save Sick Children"
• "Cure Fragile X"
• "Fight Obesity with a Cure for PWS"
• "No More Insulin Shots Required"
• "Save an Orphan With Down Syndrome"
• "Cure SMA"

leave your thoughts here in the comments. Let's take this opportunity to make a positive statement in the light of disappointing decisions.

Read more: Special Needs News | Site of the Day | What Are "Special Needs"?

_{Photo by Terri Mauro}