Fighters Tackle Childhood Diseases

"You cannot love a thing without  wanting to fight for it." -- G.K. Chesterton

Have you ever been angry at a disease? Sometimes we get angry at the diseases that hurt us, but most often the strongest anger comes when disease attacks someone we love -- especially a child.

The folks at FightSMA are taking their anger -- in this case, at spinal muscular atrophy, a genetic disorder that in some cases can kill children before their second birthday -- and doing something about it. They're angry not just that the disease exists, but that an effective therapy is almost within the grasp of the medical world.

SMA is genetic, and scientists know that at least 7 million people unknowingly carry the marker for it within their DNA. If two of those people have a child together, that child has a 1 in 4 chance of having the disease.

The families and advocates of FightSMA take their fight seriously. They have successfully lobbied to raise the public profile of this illness and raise money for research into its causes and treatments.

FightSMA has been around since 1991, founded by Joe and Martha Slay, whose son Andrew has survived to go to college and become an advocate in his own right. Martha's years of advocacy have helped her forge connections with other "fighters" -- parents of children with serious or chronic illnesses. Online, the FightSMA experience has led to:

• FightSMA.org, a site with information about the disease and current lobbying efforts
• Fightermom, a guide for family members who take on disease advocacy projects
• Fightermom Forum, an online community for disease advocates
• A FightSMA blog with updates on disease research
• The Fighting Back podcast, produced by FightSMA member Steve Mullen, highlighting disease advocates and talking about the issues they face

These folks use "Fight" in their name for a reason. They're using different Web "weapons" (blogs, forums, community) to make their case, and they're making a difference. Along the way, they're letting other families in similar situations hear the message, "You're not alone. You don't have to do this by yourself."