Riding for Rett Syndrome: Father launches monthlong ride to raise awareness

Riding for Rett Syndrome: Father launches monthlong ride to raise awareness
KC Byers is leading a bike ride across America to raise money and awareness for Rett Syndrome, a rare neurological disorder. Courtesy photo

ENCINITAS — KC Byers, an entrepreneur from Fairhope, Alabama, began the ultimate bike ride on Sept. 30 when he left Encinitas to embark on a monthlong, cross-country cycling ride to raise awareness for Rett syndrome and a fundraising goal of $250,000.

Byers, 62, is a stepdad to daughter, Katelyn, 24, who is living with Rett syndrome. The first-time event called “Rett Ride Across America,” was inspired by Byers. He said he believes it allows the Rett community to create a dialogue and critical awareness for this unknown disease.

He said he will log more than 2,600 miles during his Rett Ride Across America traveling across the 1-10 corridor from San Diego to Jacksonville, Florida, throughout October.

“When you love someone that doesn’t have the ability to complain or speak for themselves, you have to do something. This ride is for the Rett kids — for the fight and the plight that they are experiencing every day,” Byers said from the road prior to the Sunday launch.

What is Rett syndrome?

Rett syndrome is a rare, severe neurologic disorder that affects all racial and ethnic groups and occurs worldwide in one of every 10,000 female births. Currently, more than 7,000 girls and women, plus several boys, are living with Rett syndrome in the U.S. This neurological disorder is first recognized in infancy and is most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay. Since 1999, the International Rett Syndrome Foundation, known today as Rettsyndrome.org, is the leader in accelerating research for treatments and a cure for Rett syndrome.

A cancer survivor himself, Byers said he started cycling for his health (he’s had seven stents in nine years) after his cardiologist suggested he get some exercise to get into shape.

Since he was diagnosed in 2010, Byers has lost 45 pounds and cycles regularly. He said while this is the first “official” bike ride for Rett, he did ride in 2010 across the country to raise awareness on his own. Then, he rode across the country starting in Florida and ending in California.

“At 62 years old, I’m probably in the best shape I have ever been in my entire life,” he said. “I was a regular fast-food eater, had high cholesterol, you name it,” he said.

Why launch in Encinitas?

Byers said he wanted the event to kick off in Encinitas because he wanted to start off near the coast.

“I wanted a location close to water so we could do a ‘wheels in the water’ ceremony which is the best way to kick off such an event,” he said. “You can’t really claim it’s a Coast to Coast event unless you start in the Pacific and end in the Atlantic.”

As for his daughter, Byers said she has had Rett syndrome most of her life and in the 20 years he has been her dad he has not heard much about the disease.

“The only way to bring attention to it is to bring awareness to it,” he said. “I’m hoping to do more of that.”

Byers said he visits California often and has family and friends in the San Diego area.

Overall, even though it is a rare disease and not very well known, great strides are being made toward finding life-changing treatments for Rett syndrome.

“It’s our community and our voices — passionate people like KC, that provide us hope in overpowering this disorder,” said Melissa Kennedy, executive director of Rettsyndrome.org.

Byers won’t be alone on the journey, he will be joined along the way by a few fellow riders directly affected by Rett syndrome and supported by many organizations that find giving back to people in their communities as part of their corporate mission.

“Supporting our community is in our DNA. We want to do whatever we can to not only help assist KC and his incredible journey across America, but most importantly, contribute efforts to raise awareness to Rett syndrome along the way,” said Brandon Callahan, senior product marketing manager, Coros Global, an innovative sports technology company.

As a leading private funder of Rett syndrome research, Rettsyndrome.org has funded more than $44 million in high quality, peer-reviewed research grants and programs to date. The organization hosts the largest global gathering of Rett researchers and clinicians to establish research direction for the future.

Rettsyndrome.org, a 501(c) 3 organization, has earned Charity Navigator’s prestigious 3-star rating year after year. To learn more about Rett syndrome, visit www.rettsyndrome.org or call (513) 874-3020, or visit: www.rettrideacrossamerica.com Facebook: https://www.facebook.com/rettrideacrossamerica/

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