OUTER BANKS, N.C. — The Outer Banks is no stranger to visitors, but recently a cyclist passed through on a more than 2,800-mile bike ride from Maine to Florida. The reason? His niece.
"My family, we had no idea what Angelman syndrome was until we were told about it," said Charlie Nuck, the co-founder of "Bike4Briar."
News 3 met Nuck in the Outer Banks this week as he continues his journey along the coast to raise awareness for Angelman syndrome, which his 7-year-old niece Briar is living with.
"She's one of the most beautiful little girls ever. She's so happy, she smiles, she gives the best hugs, and she lets her little personality show," said Nuck.
Angelman syndrome is a rare genetic disorder that can lead to physical and developmental challenges and people diagnosed with it being nonverbal.
"Even though she's nonverbal, she'll let you know what she likes and what she doesn't like. It's been incredible watching her grow and develop too, even though it's at a different rate than most," said Nuck.
"Bike4Briar" is all about raising awareness and money for research about the disorder, which currently doesn't have a cure or approved treatments.
"Even if it just drastically improves the quality of her life, or anybody's life with Angelman syndrome, I think that that's a really cool thing that you know we've got potential for," said Nuck.
For Charlie, biking dozens of miles a day is challenging, but many families face harder challenges daily.
"I have a lot of time to think on the bike, I think it kind of reflects how families and parents who have disabled children, you can't just stop, you can't just give up, that's just not in the cards," said Nuck.
Charlie made his way down the Cape Hatteras National Seashore late last week, and the plan is to make it to Key West by June 19. This is the second time he's doing a trip of this kind. The first was last year from west to east coast in honor of his father John and Briar.
News 3 asked Nuck if he hopes this trip inspires people.
"I know that it's doing a lot of good for a lot of people, and it's not just for the Angelman syndrome community, it's for all rare diseases and for people that are even having a hard day. You can be like, oh, well, Charlie did this, I can get through this. It's much more than just supporting the Angelman Syndrome community, it's also spreading kindness and spreading positivity," said Nuck.
Nuck hopes to one day hear these words from Briar:
"Every single day my goal is to someday hopefully hear Briar say Uncle Charlie. I think that would be so cool," said Nuck.
The plan is to raise $100,000 for research into Angelman syndrome, and when News 3 talked to Nuck, he'd already hit the $58,000 mark. The primary research organization he is hoping to raise money for is the Foundation for Angelman Syndrome Therapeutics, or "FAST."
You can learn more about Charlie and Briar's story by heading to the "Bike4Briar" website, and that's where you can also show your support for this journey.
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