TARS Syndrome Association - Jylan M. Ross

Jylan M. Ross

TAR Syndrome Association

By Terry L. Watson

Photos Provided by Jylan Ross

Jylan Ross of Lexington, KY, is the founder of the worldwide TAR Syndrome Awareness movement. This movement is now nationally recognized during the month of April and is directly connected to an organization that he also leads, TAR Syndrome Association.

Jylan himself has TAR, and according to information taken from the online source, wwwrarediseases.info.nih.gov, TAR is defined as the Thrombocytopenia-absent radius syndrome (TAR syndrome) and is characterized by the absence of a bone called the radius in each forearm, short stature, and thrombocytopenia. The thrombocytopenia often appears first in infancy but becomes less severe or returns to normal over time. Infants and young children are particularly vulnerable to episodes of severe bleeding which may occur in the brain and other organs. Other signs and symptoms vary but may include heart defects, kidney defects, and other skeletal abnormalities. About half of people with TAR syndrome also have difficulty digesting cow’s milk.

The TAR Syndrome Association was founded on March 10th, 2022. The vision of the nonprofit was sparked by a conversation that Jylan had with his friend Morgan Robinson in regard to starting an online petition to raise more awareness for TA. “She has been my right-hand person since the beginning. She saw the vision and helped turn the vision into reality,” Jylan says of Morgan. She was eventually appointed the organization’s president, and today, it offers financial assistance to TAR Syndrome patients who need help paying for surgeries, medical equipment, etc.

I love giving people with TAR Syndrome a voice. These are individuals who may have been pushed to the back burner for so long.

Jylan describes himself as a family-oriented man who loves people. He loves to put other people before himself, which has shaped his character. His motto is, “Use whatever you have, and make the best of it.” Jylan shares, “I love giving people with TAR Syndrome a voice. These are individuals who may have been pushed to the back burner for so long. I am inspired when my fellow TAR brothers and sisters feel included by having their voices heard. Some have come out of their shyness, and because of the movement, they are ready to share their stories. This inspires me to keep going.”

Some of the challenges that Jylan has faced with his organization are racial and medical discrimination. He says, “There have been doctors who didn’t want to do medical research regarding TAR Syndrome because they didn’t feel it was relevant enough. Hearing those words was very hurtful and disappointing, but it sparked a fire within me to do more so that the TAR Syndrome community will always be relevant.” The racial challenges he’s faced Jylan describes as when medical facilities learn TAR Syndrome Association is run by a person of color; they tend to shy away from supporting it.

Moving forward, Jylan says he intends to make sure that his TAR brothers and sisters will forever be relevant. “I will fight for disability inclusion because it’s time for a change.”