Man bikes across country to raise awareness for rare skin disease

Published: Aug. 16, 2018 at 5:11 PM CDT
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Robb Freed, a New York native dreamt of this journey for 11 years. That's when his 13-month-old son died of a rare skin disease called epidermolysis bullosa. With just his bike as a platform - Freed is hoping to raise awareness and support for families dealing with this diagnosis.

"It gives hope to families that have children now with EB. So it's not about me, it's not about Drake E, it's not even about the bike. It's about people around the country that I've met planning the ride or being on the ride," says Freed.

Starting in Jacksonville Beach Florida, and hitting milestones along the way. Freed raised over 16 thousand dollars since March 22nd. Donations are going straight to an organization out of New York providing financial care to EB families and research.

"If I do anything to help one family financially through Debra of America- if I do one thing to provide hope to provide hope for a family with EB, it'll all be good. I can look back on it and say-- I didn't want it to end but I'm happy how it ended and what I've been able to accomplish with it," says Freed.

His trip brought him to Rapid City Wednesday - his next stop, Wall.

Freed says there are many reasons he decided to take this 7 month journey but the reason he keeps going- his son.

"I think this ride, talking about him just gives him the praise he deserves because he's changed so many lives. So many lives have changed because of his 13 months and what he's sacrificed to do that," says Freed.

There are ups and downs on a trip this long - but this journey is not like anything he has been through.

"As much as I'm home sick and want to go home, and really want to go home- there's a big part of me that doesn't ever want this to end. It's like a magical, magical thing," says Freed.

Freed plans o n being finished in the middle of October and will end his journey in Coney Island in Brooklyn.

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