Corinna Calise is 10 years old, a fact that is itself a miracle.
She has a disease called spinal muscular atrophy (SMA). Corinna cannot walk. She cannot stand. Without machines, she can't eat or breathe. It's hard to talk and hard to smile. Her par ents, Mike and Michelle, monitor her 24 hours a day. They are sleep-deprived. But they have faith. They have fun.
And they have experiences like this one:
Corinna and her mom enter a toy store in their Cranston, R.I., hometown. They're navigating Corinna's massive wheelchair (that has most of a hospital room bolted to it) around a tight corner. Corinna hears a baby crying somewhere in the store. Instinctively, and without the slightest hesitation, Corinna -- who cannot walk and cannot stand and cannot eat and cannot breathe -- whispers in a barely audible voice: "She needs our help."
What do we think of that?
What a cool, sweet kid? What a fantastic mom and dad to have nurtured this kind, indomitable spirit? What a triumph that someone dealing with unthinkable challenges thinks of someone else?
THAT MOMENT in the toy store is a butterfly-delicate insight into a group of moms across this country who are beginning to create even more miracles. Each one is a mom who is not only caring for a child with a deadly serious disease, but who also has made the decision to go on the offense and get organized to defeat the disease itself.
Corinna's mom has done that. She has her daughter's spirit. She's dealing with all she possibly can, and still she figures out a way to help someone else. She and her family hold golf tournaments and auctions and dinner dances and whatever it takes to shove just a little more money into research to defeat the disease that wants to defeat her daughter.
But it doesn't stop there.
Other moms just like Corinna's mom who are organized to fight one disease, spinal muscular atrophy, have decided to gather up all they've been learning over the past decade or so and put it into a program that they share with any mom fighting any disease or health condition targeting her child. The program is called Fighter Mom.
People are starting to hear about Fighter Mom. And a number of moms, probably at night and bleary-eyed, are finding their way to the Web site, www.fightermom.org.
Richmond mom Cindy Maynard, of The Maynard Foundation for Childhood Cancer, wrote:
"I have the Fighter Mom manual and read through it constantly, highlighting things and writing things in the margin. It has tremendous ideas. It's a step-by-step process of how you can get going and what you can do."
Each one of these special moms can take up the banner for childhood cancer or juvenile diabetes or Sudden Infant Death Syndrome or one of the 6,000 or more orphan diseases (medical conditions with names most of us have never heard of).
When Richmond-based FightSMA (Andrew's Buddies) kicked off its crusade against spinal muscular atrophy in 1991, the fledgling organization raised $100,000 in its first month. What if each of these 6,000 orphan diseases had a "Fighter Mom" at the helm raising that kind of money? My math says that would create $600 million for disease research in this country. Not bad.
THE FIGHTER Mom movement sends a very positive message: Families that battle against "their own disease" don't have to feel that they're competing against other diseases, battling for funds in a zero-sum game; instead, they can help each other.
Fighter Moms think like that, generously and without limit. They held their first-ever workshop May 9 in New York City. The free, all-day event, funded by the Toy Industry Foundation, was created by Richmond-based FightSMA, and gave 75-plus moms an opportunity to learn how to be more effective at fundraising, getting publicity, partnering with scientists and doctors, and working with Congress. A second workshop will occur in Richmond on June 18 at Bon Secours St. Mary's Hospital.
These workshops are part of parent organization FightSMA's commitment to operate transparently, so that each component of the FightSMA program (conferences, research agreements, fundraising events, Web site strategies) become "teaching moments" for any Fighter Mom who wants to push forward the medical research agenda for her own child, whatever the disease may be.
It's a strategy that could help unlock research dollars for many, many diseases. And it comes out of the same kind of spirit that Corinna showed so readily in the toy store: "She needs our help."
Corinna is right: She needs our help.
And Happy Mother's Day.
Joe Slay and his wife, Martha, are co-founders of FightSMA, the Richmond-based nonprofit that created the Fighter Mom program. Contact him at joe.slay@martinagency.com.


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