A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Monday, August 27, 2012

1 in 40 people has the gene responsible

August is SMA (Spinal Muscular Atrophy) awareness month and I couldn't let the month go by without mentioning it and posting some important facts that everyone should know. I've posted a few times before about SMA and the fact that a great girl I've known for 20+ years has done so so so much to raise awareness through her own organization, the Gwendolyn Strong Foundation. Gwendolyn is a very sweet, very pretty little girl who's just like any other girl her age (almost 5)- she loves horses, anything princessy, sparkly, and was totally into Abby Cadabby for a while! What's different about her is that she has SMA, the number one genetic killer of infants and children. The muscles in the body slowly stop working. All the muscles become affected. The mind, however, does not.

There is no cure. 1 in 40 adults unknowingly carry the gene responsible for SMA.

Researchers and scientists are really really really close to breaking through to some serious treatments that could wipe SMA off the map for good. SMA advocated need our help. Get informed. Spread the word. Participate in the campaigns to write letters to local representatives and government officials to designate funds toward more research. Seriously, you can make a difference.






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