$115,000 And She’s Still Going Strong

By Andrew Wroblewski

awroblewski@longislandergroup.com

 

Alexandra Tobin, front, receives a proclamation from the Huntington Town Board during the Nov. 6 meeting for her fundraising cause that has generated more than $115,000 toward finding a cure for Reflex Sympathetic Dystrophy – a disease she suffers from.

Alexandra Tobin, front, receives a proclamation from the Huntington Town Board during the Nov. 6 meeting for her fundraising cause that has generated more than $115,000 toward finding a cure for Reflex Sympathetic Dystrophy – a disease she suffers from.

Like many girls her age, Alexandra Tobin goes to high school. A senior at Half Hollow Hills High School East, the 17-year-old goes to classes, works for the school’s Art Honors Society, is the president of its Nutrition Club and dances at Jam Dance & Fitness in Dix Hills – activities not uncommon to typical high schoolers.

So what sets Tobin apart?

The teenager was diagnosed with Reflex Sympathetic Dystrophy (RSD). It has plagued her with severe chronic pain since she was in the eighth grade.

But instead of giving up, rolling over and accepting her blemish, she has embraced it. Tobin has raised more than $115,000 to help those who suffer from RSD, a currently incurable disease.

“She’s a great kid,” Huntington Councilwoman Susan Berland said. “She’s willing to put herself out there and say, ‘This is something I have and we need to raise money to find a cure.’ There aren’t many kids with some kind of disability that are willing to be out in front of it like that.”

During the Nov. 6 Huntington Town Board meeting, Tobin received a proclamation from the board for her efforts that have benefited the Children's Hospital of Philadelphia – a hospital that specializes in RSD treatment and where Tobin was originally treated. So far, she’s run two online fundraisers and is planning to launch another next week.

“I started just by sending out emails, but then I posted the fundraiser to social media sites and it spread further and further,” Tobin said. “The money has already done so much for the hospital and I hope it continues this way – to grow even more, get more people into the recovery program and get them functioning again as soon as possible.”

A nerve disorder that affects millions of people in the United States – and can bring about severe, chronic pain and pathological changes in bone and skin – Tobin was diagnosed with RSD while she was away at summer camp. She was scared, she said; doctors couldn’t figure out what was wrong with her, and they didn’t know what causing her pain.

“It was very scary since I was so young,” she said. “It was frustrating.”

Today, Tobin has learned to deal with her symptoms by exercising every day and monitoring her stress levels – more stress means more pain. While she still has to deal with some pain, she has, for the most part, gotten back into her normal lifestyle.

A normal, yet hectic life.

Between her fundraisers, school and extracurricular duties, Tobin lives what she called “a very busy life,” but one she’s learned to manage for her cause.

“She’s an example to others,” Berland said. “If you’re inflicted with anything – physical, emotional – you can crawl into a hole and feel sorry for yourself or you can get out in front of it and try to make a difference.”

Tobin has done just that, Berland said, and she’s gotten countless others to follow in her footsteps on the path to find a cure.