Wendy Henderson,  —

Zyah Goss-Pittman from Jefferson, Georgia, is a fun-loving, spunky seven-year-old who is proving doctors wrong whenever she can. Diagnosed at 15 months old with type II spinal muscular atrophy (SMA), Zyah has spent much of her life in and out of the hospital and has to have hours of treatments each…

Three-year-old Addilynne Shirey from Lakewood, Ohio loves preschool but has to be extra careful during the winter months to not catch colds and flus from the other students. These illnesses could be fatal since Addilynne has type 1 spinal muscular atrophy (SMA). MORE: Cure SMA releases booklet of insurance advice. According…

The European song contest Eurovision has been a much-loved tradition in Europe since 1951 and is watched by more than 100 million people worldwide.  This year’s Russian representative is Yuliya Samoylova who also happens to have spinal muscular atrophy (SMA). Find out what causes the genetic disease SMA here.  The…

The SMA Trust has released a series of SMA stories that highlight the journey some young patients with spinal muscular atrophy have embarked on. The accounts have been written either by the patients or the parents of the children. The series aims to raise awareness of the disease and…

Often one of the most frustrating things about dealing with a chronic illness is trying to decipher health insurance and what it means for you and your family. The non-profit organization Cure SMA has released a booklet offering patients and caregivers valuable advice about health insurance. Read…

Children with spinal muscular atrophy (SMA) may experience problems with breathing and clearing their lungs of mucus. In these instances, they may need a cough assist machine—but what is it and how does it work? What are the three main symptoms of spinal muscular atrophy? Find out here.  According to…

How much do you know about spinal muscular atrophy (SMA)? It’s a genetic disease that progressively weakens the muscles of babies and small children which can lead to problems with walking, swallowing and breathing. Often babies are born healthy with no visible signs of the disease. It’s only when they fail to meet…

Last week we reported that three families in Northern Ireland were fighting for their children to receive the new SMA drug Spinraza (nusinersen). Find out how Spinraza works in treating SMA patients.  Because the drug is not yet fully licensed in Ireland, the families were told that the government was…

This video from CTV News features the Bartlett family from Ontario, Canada. Sarah and Myles Bartlett are understandably excited about Spinraza and the potential the new drug has to treat their daughter Stella, who was born with spinal muscular atrophy (SMA). However, they’re still waiting for the drug to approved…

There are just four families in Northern Ireland who are affected by spinal muscular atrophy (SMA), three children have type 1 and the fourth has type 2. Find out more about the SMA treatment Spinraza. The BBC reports that although nusinersen (Spinraza), the new treatment for SMA, has been…