Pink walls, One Direction posters and a life-size Zayn cardboard cutout scattered around her room. Her room reflects a typical teenage girl, but she was anything but that. Her speaker and headphones sit near her computer as band shirts lay in her drawers. Tuning out the rest of the noise around her. Instead of planning for prom, she was planning for something bigger.

“I want to change the music industry for the better,” she said. “I want to be part of that change.”

Victoria Hamersky, 17, of South Philadelphia, started her first foundation for children with rare diseases. She was diagnosed with Ehlers Danlos Syndrome at 8 years old, which affects her genetic connective tissues and muscles.

“I was sick and tired of pitying myself,” Hamersky said. “And I was tired of no one knowing what was going on.”

Her foundation, “Rare Reality,” helps her and thousands of other children battle against the unanswered questions they and medical professionals search for. Hamersky’s goal is to make people aware of as many rare conditions as possible through her Rare Reality Festival.

The idea to start her foundation surfaced about a year ago, bringing her two passions music and concerts together.

“I want the main event to be everything I’ve ever dreamed of,” she said. “ I have to rely on other people and I have to trust that they’re going to support this 100 percent.”

A few months after coming up with the idea, she received an endorsement from the Children’s Hospital of Philadelphia, or CHOP, which allows Hamersky and her team to use their name in all of their events.

The Children’s Hospital of Philadelphia, is one of the reasons Hamersky, started the foundation. Philadelphia has the largest departments in research for children with rare diseases.

“I want to be known for something else than just Victoria from South Philly,” she said.

Hamersky’s team, although small, plays a large role in helping her achieve her vision for the foundation.

Hamersky has programmed a pre-festival fundraiser at the beginning of next year, where $1000 of the proceeds will go to CHOP and the rest will go into the production of the main event being held in the summer of 2019.

But she hasn’t been doing this alone. With the help of Total Access, a database that gives her information about particular artists and their managers, Hamersky has been able to build a bridge between her foundation and the music industry.

“I understand it takes time to build a brand and to build what you want to happen,” she said.

Hamersky working closely with total access to manage upcoming events and updates, her team helps navigate any concern or issue dealing with the production of the main event.

Despite not being able to go a day without feeling pain, Hamersky still strives to work with her foundation as well as distract herself in any other way.

Ehlers Danlos affects fewer than 200,000 people in the United States per year. Classified as a rare disease, Hamersky has been struggling with the chronic pain her entire life. She says that sometimes everyday things like walking or running, hurt.

“I use what I like to do for fun as an escape,” she said. “ I do theatre, I do dance, I have my whole life, I think that this worked itself out and everything happens for a reason.”

As Hamersky currently works on trying to obtain the license to make “Rare Reality” a non profit, she also hopes that in the midst of it all, the foundation attracts more sponsors.

Positive about the future of Rare Reality, Hamersky dishes about the struggle to find artists who are willing to come to the event and perform. The relevance of a major headliner is what Hamersky believes will make or break the festival, and said her biggest fear is no one showing up for the event.

Refusing to succumb to fear has always been a part of who Hamersky is.

“I put up a facade that I’m stronger than what I actually am and I just make it work,” she said. 

While emphasizing all the major roles and responsibilities she has, Hamersky doesn’t forget to mention her mother.

Guiding her through the bumpy road and the obstacles she faces because of her age and condition, Anna, Hamersky’s mother, paves the way for her daughter.

“I’m a know-it-all, but I don’t know enough,” Hamersky said. “I can’t preach it, until I learn it.” 

For Hamersky there is more to life than trying to conform to society, proving that with the start of her foundation, people could accomplish more if they set their minds to it.

Still at its early stages, Rare Reality is on the rise, Hamersky plans to continue to focus on the foundation, after high school.

As she looks at colleges -- such as Berkeley Online School for Business and Music Management or the University of Arts -- she hopes that she is able to use everything she learns to help her and her foundation succeed.

“I want to be known for the right reasons,” she said. “Being able to have the company I envision and filter out all the extra noise is what I want.”

For more updates about “Rare Reality” you can head over to the website www.rare-reality.com and subscribe to the mailing list. Or you could also follow Victoria Hamersky’s personal Twitter @torihamersky.

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