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The Jeffrey Journey
by Helen Baldwin
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Quick Facts About SMA
Courtesy of
Families of SMA, FightSMA, Miracle for Madison and Friends, SMA Coalition, and Spinal Muscular Atrophy Foundation
SMA is the number one genetic killer of children under the age of two.
As many as one in 6,000 babies born is afflicted with some form of SMA, which is similar to the incidence of Tay Sachs (in the Jewish population) and Duchenne muscular dystrophy.
At least 50% of children diagnosed with SMA before the age of 2 will likely die before their second birthday.
As many as one in 40 people is a carrier of the SMA gene; this is approximately 7 million people.The chance that both parents are carriers is as great as 1 in 1,600.
For EACH pregnancy with two carrier parents, there is a:
50% chance that the baby will be a carrier,
25% chance that the baby will have SMA,
25% chance that the baby will be SMA-free.It is believed that over 25,000 Americans have some form of SMA.
The prevalence of SMA is comparable to that of amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s Disease) and cystic fibrosis.
There are no race, gender, or age boundaries with SMA.
SMA Resources
Families of SMA / Forums
Fight SMA
Hispanic SMA Forum
The Jennifer Trust for SMA / Forums
Kennedy's Disease / Forums
Miracle for Madison and Friends
SMA Foundation
SMA Friends
SMASpace
SMA Support / Guestbook
Go here for SMA families' blogs and web sites
Special Resources
Angel Wings Awareness Quilt
B4SMA (Blankets for SMA)
Cole's Quilts
Kyle's Pillow Project
Our SMA Angels
SMA Medical Supply
Find a Chapter
Please sign the online petition to urge Congressional support for the SMA Treatment Acceleration Act!