About SMA

We feel like we have a whole new knowledge of SMA now. Like we finally belong somewhere. Just when we were used to the fact that Allison would never stand or walk and almost laughed when our neurologist said Allison was a strong Type II, it never prepared us for what we saw and learned at the SMA conference. We thought, "How weak that she can only pick up a baseball or t.v. remote..." Until we saw so many children with the same disease who are so much worse off. I have to be thankful for anything I can these days. I'm thankful that Allison is strong enough to breathe on her own, I'm thankful that she can eat food without a tube down her throat, I'm thankful that she can stay sitting up on her own, even for just a little while. Her disease is awful, but I have to be thankful for what we do have.

Excerpt from Family Announcement after 1st SMA Conference, June 2007

Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.

SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body - i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. Intellectual activity is normal and it is often observed that patients with SMA are unusually bright and sociable. Patients are generally grouped into one of four categories, based on certain key motor function milestones.

For more information, please visit www.fsma.org