top of page

Spinal Muscular Atrophy (SMA) Information 

Courtesy of Cure SMA, Miracle for Madison and Friends, and SMA Foundation



SMA is the number one genetic killer of children under the age of two. 

As many as one in 35-40 people are carriers of the SMA gene (approximately 7 million people). 
As many as one in 6,000 babies born annually worldwide are afflicted with some form of SMA. This 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. 
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. 

Buy The Book

SMA Organizations* 


Blankets for SMA


Claire Altman Heine Foundation, Inc.


Cure SMA 


Gwendolyn Strong Foundation 


Miracle for Madison and Friends


SMA Foundation 

*Numerous other organizations aid the SMA community in some way. The list will be updated as soon as possible! (Helen, 2-'24)
The Jeffrey Journey includes resources for SMA and for special needs in general. 
bottom of page