Summit Hill man raises awareness of cerebral palsy with a new online following
Bobby O’Gurek regularly communicates with thousands of people worldwide, without leaving his home in Summit Hill.
By posting videos on the app TikTok, he creates awareness about living with cerebral palsy, while showing off his personality.
In less than a year, O’Gurek has amassed more than 180,000 followers on the site. And he wants to use his platform to help the community.
“When I started my TikTok, my goal was to inform people about cerebral palsy and to have fun,” O’Gurek said.
O’Gurek likes to say that he has cerebral palsy, but cerebral palsy doesn’t have him.
While he uses a wheelchair and digital communication device, he graduated high school and college, and operates a web design business.
Cerebral palsy affects his motor skills, but not his mental capacity. When he’s online, he’s just like any other internet user.
During the pandemic, he started making TikTok videos as a way to make new friends and educate people about cerebral palsy.
TikTok is one of the most popular mobile apps. Users post short videos, usually showing them dancing, lip syncing, or doing something else entertaining.
In less than a year, O’Gurek gained 187,000 followers, and his videos have totaled more than 1 million views.
His personal care attendant, Stacey Miletto, helps him to set up the camera and lighting for his videos. But the ideas come from O’Gurek himself.
“We help him with videos. Other than that, Bobby took the ball and went with it, basically,” she said. “He has people from all over the world talking to him now.”
The videos often show how he uses technology to overcome his different abilities, and they also show off his personality.
His signature signoff for his videos is “I’m still here, ticking and tocking, moving and grooving.”
Several of the videos have over 100,000 views. He’s done videos explaining the history of cerebral palsy, and how different people have different limitations because of it. He’s given a tutorial on how he operates his communication device.
One of O’Gurek’s favorites, viewed 60,000 times, shows him dancing on his knees dressed as Buddy the elf. It shows people that he doesn’t need his chair.
“A lot of times, when people see O’Gurek they just see his chair. It’s not fair. I wanted them to get to know him as a person. His chair does not define him at all,” Miletto said.
But more than the short video clips, O’Gurek loves going live on TikTok. Users with at least 1,000 followers can go live. The interaction of the live session is the most exciting part of using the platform, he said.
He goes live four times a week.
When he goes live, the app notifies his 187,000 followers. They can view his live video and send messages and gifts, which O’Gurek can see pop up on his screen.
The overwhelming majority of comments are positive, but occasionally people will make accusations that O’Gurek is mentally challenged and doing the videos against his will.
He felt the need to clear the record after one recent live session. He posted a video saying that it’s his decision alone to use TikTok, and that no one is forcing him to go on it.
“My videos are who I am, a fun, caring, loving, regular guy,” he said in the video. “I am not doing this for sympathy, I am doing this to have fun.”
O’Gurek has recently wanted to use his platform to give back. Community has always been important to him; he’s a longtime member and trustee of Diligence Fire Company No. 1 in Summit Hill.
The day after a fire killed a resident of the ABC Tamaqua Hi-Rise, and displaced several others, he shared the news with his followers during a live feed.
He decided to give any gifts received during the live feed to the victims.
“They sent a lot of love,” he said of his followers. “They couldn’t believe that happened. The live session generated over $500. Through Tamaqua Police Chief Michael Hobbs, O’Gurek connected with the management of the hi-rise and donated a Boyer’s gift card so they could buy food for a holiday meal. When he presented the donations, he broadcast it on his TikTok.
He hopes that the fundraiser will be just the first of many aimed at helping people in need and local organizations. In 2021, his goal is to continue to reach more people so he can accomplish those goals.
“I am proud of what my followers have helped me accomplish,” he said.