An Ohio uncle on a cross-country mission will be riding through Northeast Ohio this weekend.
Charlie Nuck of Cincinnati has a 6-year-old niece named Briar.
She has a rare, neurogenetic disorder called Angelman syndrome.
It affects about one in 15,000 people and causes developmental delays along with a variety of symptoms that, for Briar, include a lack of speech, sleep issues, and motor coordination and balance challenges, said Charlie.
Charlie is bicycling to raise awareness and for a cure.
“I feel like they’re getting close; they’re starting to release some pretty interesting information with gene therapy. ...It takes an army, and I feel like everybody is united and working towards the same goal, which is cool,” said Nuck.
He is on a two-month trip, riding 42 hundred miles from Washington State to Bar Harbor, Maine.
Bike4Briar is raising money for the Foundation for Angelman Syndrome Therapeutics, or FAST.
"I'm just looking at it now and we have raised $107,700 so far," Charlie told me in an interview via Zoom.
He said they never expected to raise that much, and they're not done yet.
Charlie is also doing this in honor of his late father, John Nuck, who passed away last year.
"My dad was my best friend, my business partner, and we miss him deeply," said Charlie.
He was also an advocate for Briar and everyone with Angelman syndrome.
"So, take a few things that I learned from my dad and that is to help out when you can, do good when you can, and spread kindness," said Charlie.
Charlie is riding with one of his dad's best friends and fraternity brothers, Todd Downey, who he said came up with the idea. They are each biking every mile of the journey and say they're grateful for their support driver, who is with them and making it all possible.
Charlie says none of this would be possible without the amazing support they've received along the way.
From strangers giving their last dollar for the cause, to surprise parades, to free meals, bike and tooth repairs! Charlie said the ride has opened his eyes to the beauty of this country and its people.
"It doesn't matter your political beliefs, it doesn't matter your background, it doesn't matter anything like that," he said. "What matters is if you're a good person, and all these people we've met have been such great people. And it's been a massive breath of fresh air to see how many people care and want to help."
Charlie shared photos from all the places they've ridden through, from Idaho to Glacier National Park in Montana, to Fargo, North Dakota, to Bemidji, Minnesota, to the Field of Dreams in Iowa, and to Illinois — The Land of Lincoln.
Last September, I introduced you to the Synk family of Rocky River.
RELATED: Rocky River family shares story of daughter's rare syndrome
Their daughter, Immy, 3, has Angelman syndrome.
They are the ones who reached out and told me about Bike4Briar. They plan to be there to cheer on Charlie and Todd as they pedal through Northeast Ohio on Saturday, July 12, 87 miles from Huron to Fairport.
The Synks have also sponsored the day in honor of Immy, who turns four this month!
The route that day is Huron, Vermilion, Lorain, Avon Lake, Rocky River, Euclid, Fairport.
Charlie said they post their routes on the Bike4Briar Facebook and Instagram pages.
While Charlie said he loves adventure, he’s never done anything like this before. He said he doesn’t know if he’ll do something of this scale again, but he said he’s definitely found his ‘why’ and will continue to raise awareness and funds for the cause.
“I just cannot thank everyone enough who has supported us, and all the scientists and researchers working toward a cure for Angelman,” said Charlie.
