"Every day I wake up I know I'm doing my part and every day I realize it's not just about Fragile X, it's about helping every child with special needs."
That quote from a parent, Sally Nantais, in my post on Fragile X Syndrome research, is one that sticks with me. I've spent the last week profiling charity groups that got high vote totals in the American Express Members Project, but weren't selected as semifinalists by AmEx's advisory committee. A common thread in these profiles has been the way that parents drive advances in treatments and cures for rare diseases by forming organizations, raising funds, finding innovative ways to facilitate research, and volunteering their own families for testing.
One way or another, parents get it done, and they do it for every child with special needs. So much of the research done for "low profile" disabilities has implications far beyond those particular populations. Fragile X research promises to answer questions about autism; Prader-Willi Syndrome research, to address the epidemic of child obesity; eosinophilic esophagitis research, to bring insight into the food allergies that affect so many children. For many of these disabilities, major breakthroughs are only a small amount of time and money and attention away.
Parents will get it done. Money from the American Express Members Project sure could have helped, and many still have negative feelings about the way semifinalists were chosen and voters were misled. Others acknowledge that American Express is at least opening the possibility of funding for any cause that can make a case, and the publicity and excitement that comes from having a highly placed project is worth something, too. Creative funding sources like the Members Project are part of getting it done, and it would be great if more opportunities like that existed to spread the funding farther.
This year, American Express gave $1.5 million to a project promoting early detection of Alzheimer's disease; $500,000 to a project offering improved school supplies to 100,000 children in low-income communities; $300,000 to a project that would allow individuals to invest in selected small businesses over the Internet; and $100,000 each to two projects designed to feed malnourished children. Project Brain Child, which proposed to set up a pediatric genomic brain tumor registry, finished just out of the finals at #6 in overall votes.
Congratulations to the charities that received the awards this year, and may our projects for children's disabilities fare better the next time around. In the meantime, each one of us is our own miniature philanthropic organization. We may not have millions to give out -- or even, in this economic downturn, much in the way of spare cash at all -- but as long as we have time and effort and energy and enthusiasm and an acute knowledge of our children's needs, we'll get it done, for our families and for all the others who will benefit from these efforts.
The blog posts listed below include information on how to donate money or energy to research efforts for the featured disabilities -- or, in the case of the adoption ministry Reece's Rainbow, to directly change the life of individual children with Down syndrome. Please consider making an investment in these causes, or one close to your own heart. Unlike the Members Project process, this one really is your decision.