Type 0 is the worse type of spinal muscular atrophy (SMA). Fetuses that have this severe form of SMA typically die within the womb. A newborn can likely survive up…
The United States government has certain diseases that they recommend newborn babies to be checked for and currently, spinal muscular atrophy (SMA) isn't on the list. But--great news!--spinal muscular atrophy is…
Young adults with spinal muscular atrophy (SMA) have the same interests as those without SMA. You may want to go to college and pursue you dreams. Or you do you…
In the past, spinal muscular atrophy (SMA) has typically been considered a fatal disease. But there is new hope for children with the genetic disease. In Ohio, a baby with…
Jim and Kristen Farrell have two children, Braeden and Kernan, both of whom have a progressive muscle-wasting disorder called spinal muscular atrophy (SMA). The disorder can take away a child’s…
Addilynne is a 3-year-old with living with a disease that affects her muscle movement and strength: spinal muscular atrophy (SMA). But Amanda, her mother, states that SMA is an acronym for…
In India, one in 40 people carry the gene for Spinal Muscular Atrophy. If both parents carry the gene, then there is a 25 percent chance that the child may…
Spinal muscular atrophy (SMA) is caused by the loss of motor neurons in the spinal cord and the brainstem. It leads to weakness and muscle wasting that affects a baby's ability…
Shortly after celebrating baby Eli’s birth, his family got the shocking news that Eli had a fatal disease called spinal muscular atrophy (SMA). Spinal muscular atrophy can take away Eli’s…
Katie and Nataleigh have been best friends since the age of three. Last July, a difficult diagnosis would bring these close friends even closer. In July, Nataleigh had a son, Laigan.…
Carl Rooney has seen everything SMA Support UK has done for his younger brother, Daniel. That's why he's running 2,107 miles. Carl is from an English town called St. Ives, and…
12-year-old Jack Bolton has had spinal muscular atrophy (SMA) since he was born. He is confined to his wheelchair because of SMA, which causes his muscles to weaken as he…
I want you to think about spinal muscular atrophy (SMA), a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. Then, think about the word: DIGNITY. Dignity…
Did you know that the #1 genetic cause of death for infants is spinal muscular atrophy (SMA)? It quickly robs the infant of physical strength, rendering the child unable to…
Who could be against the health and well-being of newborn babies? Surely, not any decent human being. Babies come into this world in an incredibly vulnerable state. They have essentially…
An Australian couple shares their story of finding out that their daughter Aviana, has spinal muscular atrophy (SMA). SMA is a rare genetic disease, which effects the nerves that control…
Sometimes, the race to develop breakthrough treatments for rare and devastating illnesses can feel less like the Indy 500 and more like a game of Curling played by armless sloths.…
Genetic testing for rare diseases such as spinal muscular atrophy (SMA) before you conceive can be an important step in starting or building a family. It can be vital to…
An 8-year-old child in Fresno, California is receiving an FDA approved miracle drug that will possibly lengthen her life. Hayden Calafiore is the first to receive the injection as a…
Cure SMA is a nonprofit organization that has officially launched their 2017 SMA survey. This is a survey is available to those with spinal muscular atrophy (SMA) across the world. Also,…
The idea that a possibly life-altering medication is being denied to children is certainly something that will get the fires of the masses stoked. Imagine how inflamed the mob will…
Imagine walking through the woods at night. You have no lantern and no flashlight—not even a match. The darkness is suffocating, and you’re terrified. But you keep blindly stumbling. It’s…
A frequent problem with for rare disease patients worldwide is being correctly diagnosed. Prior to the diagnosis you won't know the proper treatments, you don't know why you're experiencing your…
The first medication to combat spinal muscular atrophy (SMA) has recently been approved by the United States Food and Drug Administration. It is approved for use by children as well…
Genetic testing for Spinal Muscular Atrophy (SMA). Most US-born newborns are undergo testing to find out if they have certain genetic conditions. These tests vary from state to state. There…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
