Over ten years ago, four close friends founded a charity called Angie’s Hope. One of the founders, Angie Lee, has been living with spinal muscular atrophy (SMA) since she was…
According to Seacoast Online early this year, Cohl Capparelli was diagnosed with spinal muscular atrophy (SMA) about two years ago. SMA is one of the diseases that the Muscular Dystrophy Association…
Kumail was diagnosed with spinal muscular atrophy (SMA) and started Spinraza in an international trial. As The Herald Sun reports, he began the treatment at six weeks old before he…
Some good news for patients with Spinal Muscular Atrophy (SMA) and their families! There's a new booklet out with detailed information on how to navigate the increasingly complex health insurance…
Kids with spinal muscular atrophy (SMA) have a hard time with an evaluation method known as "pair-matching tests." They have a harder time identifying what number, letter, color, or object…
When Ellen Ripley used the Caterpillar P-5000 Work Loader to pick up the xenomorph queen in the 1986 science-fiction masterpiece Aliens, who would've known the suit was inspiring the next…
The U.S. Food and Drug Administration (FDA) approved Biogen’s SPINRAZA™ (nusinersen) under Priority Review for the treatment of spinal muscular atrophy (SMA) in pediatric and adult patients. SPINRAZA is the first and only…
Spinal muscular atrophy (SMA) occurs when the immune system attacks motor neurons, resulting in the muscles surrounding the spinal cord atrophying (degenerating). SMA is an inherited disorder that disables the…
The line between genius and madness is often closer than people realize. Don’t tell Dr. Sergio Canavero that he can’t help his patient with spinal muscular atrophy (SMA). How many…
Adyn’s Dream is a charity in Athens, Ohio. The organization provides live events that benefit families and their children that have received a diagnosis of spinal muscular atrophy (SMA). The…
Alexander Davis è di Tipton, Indiana. Ha vissuto con atrofia muscolare spinale (SMA). SMA lo impedisce di muoversi molto e non è in grado di camminare. Pertanto, ha bisogno di…
Alexander Davis est originaire de Tipton, Indiana. Il a vécu avec une atrophie musculaire spinale (SMA). SMA l'empêche de bouger beaucoup et il est incapable de marcher. Par conséquent, il…
On a beautiful summer day, a baby girl named Remi made her debut in the world. To all appearances, everything was normal—10 fingers, 10 toes, and bright eyes. Her parents…
Passion. Passion doesn’t persist. It is there, and then it is gone. Standing on the diving board is pre-passion. Falling toward the water is post-passion. It's the jump that's ripe with…
Alexander Davis is from Tipton, Indiana. He has been living with spinal muscular atrophy (SMA). SMA prevents him from moving much and he is unable to walk. Therefore, he needs extra…
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.…
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.
