Author Archives: BNS Staff

From left, Antoine and Janelle. (Photo courtesy of Janelle Fiesta) Day 7 of 31 This is Janelle Fiesta’s story: When I was in elementary school, I knew that I was physically different from my peers. Besides being the only student in…

From left, Tonje, Morten, and baby Gulla. (Photo courtesy of Tonje Larsen) Day 6 of 31 This is Tonje Larsen’s (@rollin_with_tonye) story: Hi, my name is Tonje. I’m 23 years old and was born with spinal muscular atrophy (SMA) type 2. I…

Jose and his wife, Andrea. (Photo courtesy of Jose Flores) Day 5 of 31 This is Jose Flores’s (@joseinspires) story: A barrier is any obstacle that prevents movement or access. My name is Jose Flores, and I’m a 45-year-old from Florida, a global…

Photo courtesy of Chessa Birrell Day 4 of 31 This is Chessa Birrell’s story: My name is Chessa Birrell. I am 26 years old and have SMA type 2. I live with my parents in Powder Springs, Georgia. I graduated from the University…

Photo courtesy of Stéphanie Houvet Day 3 of 31 This is Stéphanie Houvet’s (@stefookie) story: My name is Stéphanie and I’m from France. My father is French and my mother comes from the Czech Republic; they met on holidays. I was born in…

Megan DeJarnett, left in wheelchair, with her husband, Jake, and her sons Bronx, left, and Shai. (Photo courtesy of Megan DeJarnett) Day 2 of 31 This is Megan DeJarnett’s (@megandejarnett) story: I remember being around 10 years old when I heard the doctor…

(Photo courtesy of Shaniqua Granby) Day 1 of 31 This is Shaniqua Granby’s (@shaniqua__niqua) story: A few people have said to me, “You know, Shaniqua, it’s so cool that you are an attorney,” and while I do believe I accomplished a fantastic objective…

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient input into research. The goal is to help the pharmaceutical industry deliver innovative new therapies faster and smarter, the…

Spinraza (nusinersen) effectively preserves respiratory muscle strength in addition to motor function in children with spinal muscular atrophy (SMA) type 2, according to a real-life, small study in France. Larger studies are needed to confirm these findings, and to determine the usefulness of age-adapted respiratory muscle assessment as an efficacy measure…

Researchers have found changes in the electrical activity between the brain and muscles in adults who had childhood polio — an infection that affects the same motor neurons as those impacted in people with spinal muscular atrophy (SMA), a…