You Searched For "spinal muscular atrophy" and got 20 results
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2 mins read
Parents raised $2 million for their baby's life-saving medical treatment, and then got the treatment for free
The family was selected by the drug's manufacturer to get free treatment, and will pass along the m…
Kelly Burch
2 mins read
Custom accommodations make dream come true for Tennessee teen with rare spinal disease to see Taylor Swift in concert for the first time
Nora Gooden's parents surprised her with tickets to a Nashville stop of Taylor Swift's Eras Tour in…
Kenneth Niemeyer
4 mins read
How a sedentary lifestyle can cause muscle atrophy and what you can do to prevent it
Muscle atrophy is when muscles shrink from lack of use. It can occur due to an injury, a neurologic…
Allison Torres Burtka,Jason R…
5 mins read
An outlandish surgeon who aims to do the first head transplant has severed and reconnected the spinal cords of 9 mice
A big issue after any transplant procedure is the reaction from the patient's body. Typically when …
Erin Brodwin
3 mins read
Govt waives clinical trial requirement for several drugs approved in select countries
This waiver would ensure expeditious availability of the latest medicines for treating diseases …
PTI
2 mins read
Disabled travel blogger carried off Air Canada-operated flight in 'broken aisle chair'
Tori Hunter, 26, uses an electric wheelchair due to a neuromuscular condition called spinal muscula…
Rebecca Rommen
3 mins read
I'm in a wheelchair, and my wife is able-bodied. We have a satisfying sex life, and our relationship is equal.
An interabled couple known as Squirmy and Grubs on YouTube has a normal sex life and balanced marri…
Kelly Burch
4 mins read
YouTuber Shane Burcaw used AI to see how he'd look if he didn't use a wheelchair: Like 'a creepy string bean'
Shane Burcaw, who is one half of the YouTube duo Squirmy and Grubs, was curious to see what he woul…
Lindsay Dodgson
1 min read
Centre gives full basic customs duty exemption on import of drugs for rare diseases
In a significant step, the Centre has given full exemption from basic customs duty on all drugs as …
3 mins read
At 63, I'm one of the oldest women living with my rare genetic condition. I'm also a musician, and thanks to new treatments, I'm going on tour.
After being diagnosed as a child and going through multiple failed treatments, she found a treatmen…
Kelly Burch
4 mins read
I've raised over $4 million for research on my son's disorder. A cure won't happen in his lifetime, but I want to help others.
The author and his wife took a loan against their home to help fund more research to find a treatme…
Mike Graglia
3 mins read
I was told my daughter would never walk because of a rare genetic disease. We just strolled down the catwalk together at New York Fashion Week.
When my child was diagnosed with spinal muscular atrophy, I was told she'd never walk. Four years l…
Kelly Burch
2 mins read
My children have the same degenerative condition. I wish I had gotten genetic-carrier screening earlier to get them treated faster.
When her son wasn't walking by 18 months, the author decided to look for answers. She took a geneti…
Kelly Burch
3 mins read
I've had to design and adapt Halloween costumes to fit my daughter's wheelchair. The lack of options shows how far we still have to go with inclusiveness.
The 3-year-old uses a wheelchair to move around due to a genetic condition; her mom has had difficu…
Kelly Burch
3 mins read
When her daughter was diagnosed with a rare genetic condition, this mom became a nurse to care for her
She left her career as a paralegal to become a registered nurse. She made the switch so she could c…
Jane Ridley
4 mins read
The most expensive drug in the world has a $3.5 million price tag. 2 potential patients share their hopes and fears for the one-time treatment.
Patients with the blood disorder hemophilia told Insider they're excited about the new gene therapy…
Andrew Dunn
5 mins read
A disabled writer says Alaska Airlines 'destroyed' her wheelchair on her way to model for New York Fashion Week
While flying to model in an adaptive fashion show at New York Fashion Week, Allegra Keys' wheelchai…
Talia Lakritz
9 mins read
'Like we were being forced to gamble with our son's life': Health insurers won't pay for a $2.1 million drug for kids, and parents say they're running out of time
Gene therapies are cutting-edge treatments that could make big differences for debilitating disease…
Emma Court
2 mins read
Aetna will now pay for more kids with a devastating rare disease to get a $2.1 million drug, reversing earlier denials
"While the data on Zolgensma is limited, emerging information, expert opinions and the promise of t…
Emma Court
5 mins read
A top executive at Swiss drug giant Novartis told us the inside story of the $2.1 million price tag for the most expensive drug in the world
Payers have also been very interested in agreements where a portion of the price tag is returned in…