A combination of the words donor and dystonia, “dystoner” is the term UVU student Ryan Rowbury, and BYU law student Jarom Phipps, have coined to describe supporters of their non-profit organization, Tonic for the Dystonic.
Tonic for the Dystonic is a non-profit dedicated to strengthening and providing aid for those with dystonia.
According to the Dystonia Medical Research Foundation’s website, dystonia is a movement disorder which causes muscles to contract and spasm involuntarily. Dystonia causes varying degrees of disability and pain from mild to severe. It can affect a single body area or be generalized throughout multiple muscle groups.
Founders of Tonic for the Dystonic, Rowbury and Phipps, said their mission is to spread awareness of the disease through campaigns and public events and to raise money to donate to dystonia research.
Rowbury and Phipps started the non-profit for their childhood friend, Aubrey Hedlund, also a BYU student, who was diagnosed with dystonia at age 12.
Rowbury said he and Hedlund spent a lot of time together as children in Sacramento, Calif.
“We were like two peas in a pod growing up,” Rowbury said. “We’d go running, play sports together, then all of a sudden one day she had issues with her muscles and she couldn’t run anymore, she couldn’t play sports with me anymore.”
Although Rowbury and Phipps officially started Tonic for the Dystonic in July of this year, Phipps said the idea for the organization is nothing new.
“Probably about a year ago, Ryan and I were talking about things we want to do and we had this idea to start a non-profit for our friend Aubrey and her disease,” he said. “We thought to ourselves, hey we’ve got the time, we really care about this person, let’s make it happen.”
Tonic for the Dystonic is using custom T-shirts, social media and public events to raise awareness and generate donations for Dystonia research.
“One thing we do is that if someone donates $10, we give them a free T-shirt,” Phipps said. “We have two styles — one of them says ‘Tonic for the Dystonic’ and the other one says ‘I’m a dystoner.’ ”
Phipps said the T-shirts are a good conversation starter since most people know little, if anything, about dystonia.
“When we wear our shirts we’ve had random people come up and ask, ‘What’s a dystoner?’ ” Phipps said. ” It sounds kind of sketchy, but we’re able to explain, ‘Oh, it’s someone who knows about dystonia and someone who supports it.’ We’ve had a lot of success with that.”
On Tonic for the Dystonic’s Facebook page, there is a photo album dedicated to dystoners.
“We have people who bought a dystonia T-shirt upload photos of them doing their regular day stuff or their hobbies,” Phipps said. “It helps people with dystonia see that there’s a whole variety of people out there committed to raising awareness.”
Another way Tonic for the Dystonic has raised awareness is through YouTube.
Rowbury, Phipps and their friends made a video of mini-golf trick shots. Phipps said KSL showcased the video on their home page for about a week. In a little over seven days, the video received more than 10,000 views.
“We put our Facebook page and our blog link at the end of the video,” he said. “That way people could watch the video and see at the end that this was done with the charity in mind. It was a really great awareness tool.”
Phipps said he is working to organize events like a mini-golf tournament, long boarding competition and video game tournament.
“All these events will be for raising money and awareness so that people who come to the events get to know about dystonia,” he said.
Tonic for the Dystonic members have organized car washes over the last few months to help raise money for their growing non-profit.
“We’ve done several car washes to raise money so we can get our feet off the ground,” Phipps said.
Hedlund said although Tonic for the Dystonic was started because of her, it isn’t for her alone.
“When I think about the non-profit I think not so much about myself, I think about all my friends who have dystonia and about what could come from spreading what dystonia is,” she said.
Hedlund said she is grateful for Rowbury and Phipps and their support.
“The thing I think is great is here are these two young guys who are in college and they’re going out, doing things and starting organizations and really putting their heart into it — that’s what society should be like,” she said.
Hedlund said although there is currently no cure for dystonia, it is still important to raise awareness and support research.
“It takes the right person to get something started,” she said. “We can’t get anything started until we find that one person who can propel us into something greater than what we are.”
Phipps said supporting Tonic for the Dystonic is a great way for BYU students to give back to their community.
“We see it on the sign and we hear it on the slogan — enter to learn, go forth to serve,” he said. “Tonic for the Dystonic is an opportunity to make that slogan more than just rhetoric.”
For more information on Tonic for the Dystonic, visit their Facebook page. To hear Aubrey Hedlund’s story or to make a donation, visit tonicforthedistonic.blogspot.com.