There can’t be many people in the SMA community who haven’t heard the great news about the U.S. Food and Drug Administration’s (FDA) approval of the spinal muscular atrophy drug Spinraza (nusinersen). The drug can be used to treat SMA in babies, children, and adults. Find out how Spinraza (nusinersen) works in…
Caring for someone with spinal muscular atrophy will present many challenges along the way. As your child grows, these challenges will change and you will need to be flexible and adaptable. We’ve compiled a list of some general tips to help you with some of the milestones your child will…
In this informative National Geographic Channel video shared by Haikal Mansor in 2011, we find out about muscles, how they work, and what can go wrong with them in the human body. Read about eight notable people with spinal muscular atrophy. The video features two people: 31-year-old Jason…
This short video from MuscleOwl shares the facts about the FDA’s approval of Spinraza (nusinersen). The approval is great news for the SMA community and gives patients and parents renewed hope for the future. Catch up on 2016’s top 10 articles about SMA. The efficacy of Spinraza in a phase 3 clinical…
In this emotional video shared by Sazan Hendrix, a group of old college friends decide to pay a visit to a friend and her son Jack. Find out how Bryce handles being a junior high school student with SMA. Jack is 13 months old and has spinal…
This video from Youreka Science explains exactly how the newly FDA-approved drug, nusinersen, works in helping children with spinal muscular atrophy (SMA). Nusinersen found safe and effective in treating infants with SMA Type 1. The film explains the genetic defects which lead to SMA, the faulty genes involved and how…
In this Fight SMA annual webcast from 2014, a panel consisting of Dr. Chris Lorson, Dr. Elliot Androphy, Dr. Adrian Krainer, Dr. Charlotte Sumner, Dr. Brian Kaspar, Dr. John Porter, and Dr. Alex MacKenzie talk about the advances in the treatment of spinal muscular atrophy (SMA). The webcast was filmed…
A spinal muscular atrophy (SMA) diagnosis is an incredible blow to families, as their child is often just a few months old and the prognosis they are given is usually bleak. However, the strength and determination of families in the face of such adversity is truly amazing and there is…
In this video from The Joy FM, we see part of the Florida-based radio station’s 30-year celebration, 30 Wishes. The eighth wish that the team wanted to grant was for nine-year-old Jamey and his family. Find out about the fourth grader who made her classmate’s dream come…
In this video from Beike Biotech, we meet five-year-old Reagan and her nurse, Tonya. Tonya explains that Reagan was diagnosed with spinal muscular atrophy (SMA) at eight months old and doctors believed she would die before her second birthday. The family was told that there was nothing they…
