NBC News

Woman With Rare Genetic Disorder Throws Out First Pitch at Fenway Park

Rebecca Alexander was diagnosed with Usher syndrome when she was a teenager

The first pitch at Fenway Park in Boston on Thursday was a part of a mission for one inspiring woman who is determined to spread awareness about a rare genetic disorder.

Rebecca Alexander was diagnosed with Usher syndrome when she was a teenager. It slowly leads to deafness and blindness, and Alexander, who is also the sister of NBC News White House correspondent Peter Alexander, was originally told she would be completely blind by 30.

Instead, she’s now 39 and using cochlear implants to help her hear. She is slowly losing her sight, but not her ability to live life to the fullest and help those with a similar diagnosis.

“I’ve always had a lot of energy, but having a condition like this really does put life in perspective,” Alexander said. “I don’t have time to sit around and feel sorry for myself.”

Alexander has done anything but sit around, including swimming from Alcatraz and climbing Mount Kilimanjaro. The athlete turned activist is now visiting major league baseball stadiums. She is throwing out the first pitch with the hope of raising awareness and money for research that could lead to a cure.

“I want to put myself out there to say this is Usher syndrome. We have a face. We’re a strong community and we’re not alone,” Alexander said.

In the crowd of fans at Fenway Park were others with the same disorder, including Hannah Corderman, of Needham, who said Alexander inspires her.

“I just look at Rebecca and I’m like okay I don’t have to let the disease define me or stop me,” Corderman said.

Fenway is not Alexander’s last stop. She is headed to the baseball stadium in Tampa next with the goal of one day visiting all 30 major league baseball parks. She is traveling and telling her story, which is also featured in her book called “Not Fade Away: A Memoir of Senses Lost and Found.”

To learn more about Alexander and Usher syndrome visit her website.

Contact Us