Defying the odds and climbing mountains to advance SMA research

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WATCH ABOVE: Sammy Cavallaro and Adamo Mariani join Global’s Kim Sullivan and guest co-host Angela Price to talk about his fundraising efforts to help support research into spinal muscular atrophy – Jan 6, 2017

Sammy Cavallaro may only be 16-years-old, but he’s already an accomplished fundraiser and ardent activist for those living with disabilities.

Cavallaro was diagnosed with spinal muscular atrophy (SMA) as a baby, a genetic disease that affects the motor nerve cells in the spinal cord.

“It basically means that your muscles don’t develop,”Cavallaro said. “It affects everyday life.”

Things that most people take for granted, such as sleeping, eating, talking and breathing can be challenging for someone with SMA.

“There are four types of SMA. Type I is the most severe and type IV is the least severe,” Cavallaro explained.

“I’m type II, so I’m kind of in the middle.”

That may be so, but he’s far from the norm – rather, he’s the exception.

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Life expectancy for children with SMA is two years old.

“It’s the number one killer of infants under two, for a genetic disease,” Adamo Mariani, Cavallaro’s cousin and staunch supporter said. “You’re a star.”

Mariani is planning to climb Mount Kilimanjaro – Africa’s highest peak – to raise awareness and funds for SMA.

“There’s so much Sammy can’t do, but there’s also so much he can do. This is something that I want to give back to him,” Mariani said.

His goal is to raise and donate $25,000 for SMA research, which would be the largest amount ever donated by a single individual.

In the last thirteen years, Cavallaro and his family have raised over $1.3 million for SMA research.

Most of those funds come from the hosting of an annual gala event called Sam’s Valentine’s Gala held every Feb. 11.

But Cavallaro is not one to rest on his laurels, he’s the brainchild behind @sickhighlights, an extremely popular Instagram account.

“I post sports highlights every day,” Cavallaro said. “I have 1.6 million followers.”

The teen picks and edits the content himself.

He also has a clothing and lifestyle brand called Sick Attire and a portion of the proceeds raised through the brand are donated to families with SMA.

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For more information on SMA or to donate to the cause,  head to Sammy Cavallaro’s website.

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