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 WYMT Television video, learn more about Kirsten’s family, who saw their lives change when she was diagnosed with spinal muscular atrophy (SMA). The family is determined to keep fighting, and to do so, they host an annual 5K in support of researching,…
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…
Staying active when you have spinal muscular atrophy (SMA) can help alleviate some symptoms. But over the holidays it can be difficult to find the time to do so. With this in mind, we’ve put together a list of tips to help you find time to exercise throughout the…
In this short animated video from Julia Brownholtz shared in January 2015, we find out some basic information about spinal muscular atrophy (SMA), a rare genetic disease which affects around one in 10,000 babies and the number one fatal disease for infants. Read about five experimental therapies…
In this FightSMA video shared in July 2011, Pediatric Clinical Nutritionist Erin Seffrood explains the Elemental Diet, including what it consists of and how it may benefit children who have spinal muscular atrophy (SMA). AveXis announces pivotal trial design of type 1 SMA therapy candidate. Find out more.
Get regular updates to your inbox.