Take two and a half minutes to look at just a few of the faces affected by spinal muscular atrophy (SMA):

Do you know about SMA?

Joe and Martha Slay, FightSMA’s founders, have described their introduction to spinal muscular atrophy (SMA) this way:

Our history began, as yours may have as well, in the pediatrician’s office where we took our then 14-month-old son, Andrew, because he was not yet walking. He had had a picture-perfect first year, with no indications whatsoever of any problems. But we, and the pediatrician, wanted to make sure that at 14 months (and not yet walking) all was in order. The doctor thought an ankle felt weak, and he recommended a specialist take a look. That specialist showed a higher level of concern and began throwing out names of terrifying diseases for us to eliminate as reasons. He sent us to yet another specialist, a brilliant and kind man, who did more tests, then pulled out a yellow legal pad and slowly, line by line, bulleted out his logic for why he thought Andrew had a disease we had never heard of called “spinal muscular atrophy” or SMA. He said it was “not a nice disease.” Crippling. Wheelchairs. Often fatal in a child’s early life. “I can give you no hope,” he said. “Now you have to get on with parenting.”

So, there we were.

Our greatest source of happiness was threatened, practically handed a death sentence. There was nothing that could be done. There was virtually nothing going on with SMA research. It was genetic, but no one knew what the gene was. That was unknown.

All of the happy colors drained out of the world. It assumed shades of grey.

As they met more families affected by SMA, especially after founding FightSMA (originally known as “Andrew’s Buddies”), the Slays discovered that like themselves, most people never hear about SMA until it affects a member of their family or circle of friends. And this is something the SMA community as a whole is working to change – especially through online efforts like the first SMA Blog Party.

Why? Because:

• Currently, there is no known cure or treatment for SMA.
• SMA kills more babies than any other genetic disease.
• Historically, nearly half of babies born with the most severe form of the disease have died before age two.
• And, seven million potential parents carry the gene that causes SMA – and most don’t know it.

For a patient with SMA, the simple acts of coughing or swallowing can become difficult or even impossible. This may lead to a blocked airway or pneumonia – both potentially lethal. In the most severe form of SMA, symptoms present before the age of six months and these children never acquire the power, the strength, and the endurance to sit independently, to crawl, or to walk. Despite the physical weakness SMA inflicts on the body, the mind remains unaffected. Intelligence is unaffected, and in fact, many physicians who have worked with children with SMA are impressed that they tend to be unusually alert, interactive, and socially gifted.

Now that you know about SMA, there are multiple ways to help in the fight to defeat it. Here are just a few:

• Contact your Representatives and Senators about the SMA Treatment Acceleration Act.
• Join the effort to fund SMA gene therapy – including voting (for free) to Help SMA Win $20,000 in Samsung Helmet of Hope (For More) Contest.
• Learn more about SMA and help spread awareness.

Meet another family affected by SMA:

Watch the full 13-minute version here.

It has been hard to keep up with all the SMA Blog Party post. Here are just a few of the many:

• Strong Family
• Byrd Family
• Butler Family
• Fuorvito Family
• For the Calise Family
• For the Kennedy Family
• For the Hawn and Strong Families
• Lucas Family
• Schmid Family
• Hatchard Family
• For the Webster Family
• Baldwin and Schaefer Families
• O’Neill Family
• For the Horton Family
• Mastin Family