LEXINGTON, Ky. (LEX 18) — What started in Lexington has grown into a global movement raising awareness for TAR syndrome, a rare genetic condition.
"TARS is an acronym. It stands for thrombocytopenia absent radius, and it is the deficiency of the platelets," Jylan Ross said.
Ross, the founder of the TAR Syndrome Association, is raising awareness to create understanding and give a voice to others like him.
"I was born with it, and it is something that you're born with, not something that you, you know, happen to get," Ross said.
This April, Ross is encouraging people to wear royal blue, share stories and use the hashtag #TARsyndromeawareness. The message is now reaching far beyond Kentucky.
"It means the world to me to be able to advocate for the world, and people say, well, how are you advocating for the world? There are so many people not just here in the US but in Brazil, Spain, Europe, Germany, just to name a few countries," Ross said.
The message continues to grow, even as many with TAR syndrome still face challenges getting recognition and support.
"TARS is not recognized federally as a disability, which is why a lot of people with TARS syndrome don't get like SSI or things like that as far as disability, what they should be getting," Ross said.
Ross is also inviting the community to get involved locally.
"I have a heart for people like me because I was once outcasted, and so those who are outcasted and don't have a voice, I'm a voice for the voiceless," Ross said. "Being different, looking different, you know, you don't always get the welcoming experience. So, if you see somebody that looks different than you, show them some love. You know, get to know them because you'll never be able to know someone's story unless you sit in and talk with them."
Lexington's annual TAR syndrome walk is on April 18th from 9:00 a.m. to 1:00 p.m. at the Lexington Legends Stadium. For more information, click here.
