In this video from Shayne Wilson, shared in 2013, shares a little about the work of the Muscular Dystrophy New South Wales (MDNSW) charity and how their Duke of Edinburgh scheme has helped Melanie Tran to achieve goals she didn’t think possible, such as playing ramp 10-pin bowling.
This inspiring film from FireRock Productions, shared in 2013, is about a 20-year-old student named Shane Burcaw. Shane has spinal muscular atrophy (SMA) and has been in a wheelchair since he was two years old. Find out how a charity helped a teen with SMA become a…
In this video from DNA Learning shared in July 2012, we meet the Cuevas family. Ron and Debbie talk about their children’s understanding of spinal muscular atrophy (SMA). Find out what it’s like to live with a degenerative muscular condition from eight-year-old Jack. The Cuevas have two…
In this touching video from FightSMA, we meet the Kemp family. Having already suffered the sadness of losing their daughter Madisyn to Type 1 spinal muscular atrophy (SMA) in 2008, Brandon and Patti went on to have three more children. Find out what the three main symptoms of…
In this video from BettyLou Ross, we meet some families with a child that has spinal muscular atrophy (SMA). The families talk about living with SMA and their hopes for the future, like being able to live independently, have a career, and ultimately see a cure which would…
In this heartwarming video from Robert Harding, we meet Cameron. Cameron was diagnosed with type 1 spinal muscular atrophy (SMA) at five weeks old and was given just six to 12 months to live. The family decided to enroll Cameron in a clinical trial for the drug nusinersen and…
Spinal muscular atrophy (SMA) is a rare genetic disorder where muscles in the body degenerate over time. It is a regressive disease which can, depending on its severity, lead to being unable to walk, talk, swallow and breathe. Here are some key facts about the disease based on information from…
In this inspiring video from MDA, we meet Jimmy Valdes and his wife, Julie. Originally from Queens, New York, 47-year-old Jimmy was diagnosed with spinal muscular dystrophy (SMA) in 1971 at two years old. Find out all about AJ Brockman, the digital artist with SMA. Jimmy says…
https://www.youtube.com/watch?v=_viH9zwOhRc Starting a family can be a difficult topic to broach when you have a disability. In this video from Channel 4, we meet Jaz and Kelly. Kelly has spinal muscular atrophy (SMA) and is wheelchair-bound. Discover eight notable people who have spinal muscular atrophy. The couple has…
This film, directed by Jeremy Ryan Carr and shared in 2013, is about Bryce. Bryce was diagnosed with SMA at the age of 15 months and his parents, Kelly and Dan, were told it was unlikely that Bryce would live beyond his second birthday. Watch the story of…
