Did you know?
• SMA is the #1 genetic cause of death for children under the age of two.
• SMA affects families of all ethnicities.
• Most people who are carriers have no family history of the disease.
Spinal Muscular Atrophy:
Are you 1 in 50?
1 in 50 Americans is a carrier for Spinal Muscular Atrophy (SMA), a serious inherited condition
"I hope that through our story there are other people who can understand this can happen to you"
- Ethan
Emily and Ethan Bessey didn’t know anything about SMA when their son Ezra was diagnosed at just four months old.
Hear the Besseys tell their story.
WHAT IS sma?
Spinal muscular atrophy (SMA) is a serious inherited condition that causes certain nerves in the brain and spinal cord to die.
In the most common and most severe form of SMA, babies have trouble breathing and swallowing, cannot sit up without support, and will not meet any motor skills milestones. Tragically, most babies with this form of SMA will not survive past the age of two.
what CAUSES sma?
SMA is caused by changes in the SMN1 gene, which controls motor neurons in the spinal cord and brainstem.
If two people who have changes in the SMN1 gene (these people are called “carriers”) have children together, there is a 1 in 4 (25%) chance with each pregnancy of having a child affected with SMA.
“I truly believe that knowledge is power”
- EMILY
Taking a simple blood or saliva test, called a carrier screen, before or early in pregnancy can help parents-to-be learn their risk of passing on serious conditions like SMA.
In 2017, the American College of Obstetricians and Gynecologists (ACOG) recommended that carrier screening for SMA be offered to all women who are considering pregnancy or are already pregnant.
“Offering expanded carrier screening should be as common as screening for Down syndrome or cystic fibrosis”
- EMILY
help us spread the word about sma
While there has been exciting progress with the approval of the first ever therapy for SMA, there is still much more to be done for those who are affected and their families.
In 2013, the Besseys founded the Hearts for Ezra Foundation to honor the memory of their son Ezra. They have raised over $40,000 to help raise awareness of SMA and fight to find a cure for this heartbreaking disease.
“Our hope is that with awareness comes funding and with funding comes a cure.”
- The Hearts for Ezra Foundation