When a child is diagnosed with spinal muscular atrophy (SMA), a tremendous amount of stress and burden is heaped on the entire family. In this WomenTalk TV video, Rebekah Choong allows us into her daily life as a full-time working mother of two daughters — one of whom has type 1 spinal muscular…
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https://www.youtube.com/watch?v=wOTFiztJBuI Nine-year-old Izzy Zahn wanted to help someone, so she decided to make a book of her photography and sell it to raise money for the Make a Wish Foundation. Book sales came to $6,600. Bright, funny, and talkative 2 and 1/2-year-old Scarlet happens to have SMA. Little did Izzy know that…
Spinal muscular atrophy (SMA) is a genetic disease that affects about 1 in 10,000 babies. The neurodegenerative disease is usually diagnosed between the ages of 6 months and 2 years old. Four different types of SMA exist with type 1 as the most severe with poor prognosis, to type 4 which…
It’s that time of year when everyone starts to get sick and pass around their cold and flu germs. Having a chronic illness means that your immune system is already compromised, which makes picking up other people’s winter illnesses harder to avoid. However, you don’t have to lock yourself away…
This MediaStorm documentary is all about Philly Mayer. Philly is a bright and happy nine-year-old boy who was diagnosed with spinal muscular atrophy (SMA) as a toddler. Read about the four types of spinal muscular atrophy here. The Mayers realized something was wrong when Philly suddenly stopped…
In this video from the DNA Learning Center shared in July 2012, attorney Steve Mikita recalls attending Duke University and then taking the bar exam as an adult with type 3 spinal muscular atrophy (SMA). Find out about issues faced by young adults with SMA. Click here. Mikita was so…
Spinal muscular atrophy (SMA) is a rare genetic disorder that affects around one in 10,000 babies. The severity of the disease varies, but children with SMA are usually unable to walk and after time, muscle degeneration can affect their ability to sit, swallow and breathe without assistance. Diagnosis of the…
In this MDA video meet Joe Akmakjian, a 24-year-old with SMA who lives his life to the fullest and is about to embark on his biggest test of independence yet. (Hint to his family: He’s moving out.) Read more about issues that young adults with SMA face.
Spinal muscular atrophy (SMA) is a life-threatening genetic disease that affects approximately 1 in 10,000 babies. The progressive muscle-wasting condition, depending on severity, can leave children unable to walk, sit unaided, swallow, and in very severe cases even breathe. Read about five experimental SMA therapies you might find interesting.
In this heartwarming The Gamers’ Charity video shared in July 2014, we meet Ben. The 13-year-old boy had always envied his friends’ ability to play video games. Because of spinal muscular atrophy, Ben was unable to use regular controllers — until he found a charity that helped him join the fun.
