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New Cereal Challenge raising awareness and money for rare syndrome

Dorie Shapiro won't let Usher Syndrome Type 1F keep her down.

SCOTTSDALE, Ariz. — There is a new social media challenge out there.

The Cereal Challenge is meant to focus attention on what it is like for someone who cannot see to make their own bowl of cereal.

It was started by Jared Root, whose son Zachary was born with Usher Syndrome Type 1F. His favorite food is cereal.

It’s meant to create awareness for the syndrome that robs a person of their hearing and eventually their vision, and it's something Dorie Shapiro of Scottsdale knows all about.

“I thought it was the most unfair diagnosis ever,” said Shapiro.

Shapiro was born profoundly deaf and, with the help of a cochlear implant and attending a school for the deaf, learned how to communicate.  

She thought she had overcome her physical obstacle.

Then at age 15 she was diagnosed with Usher Syndrome Type 1F, which could eventually take her sight.

“I was almost going to get my learner's permit. I was so excited. Start driving and live my life,” said Shapiro.

Her life was going to have to take a different route than the one she was hoping for.

“My central vision is very good, but my vision is like tunneled,” said Shapiro.

Much of her peripheral vision is blank.

But she won’t let this syndrome stop her from living her life. She graduated from the University of Arizona. Shapiro, now 33, works for an educational tech company and travels the world.

“Both my parents instilled this in me. Always turn your weakness into strength,” said Shapiro.

That strength is what also pushes her to raise money to help researchers find a cure that may be around the corner.

“They are so optimistic there will be a cure in two to 10 years,” said Shapiro. “The world is my oyster. I’m going to keep fighting and raising awareness for Usher 1F and what it can do for the future generation as well.”

Organizers of the challenge are hoping to raise at least a quarter of a million dollars to research Usher Syndrome Type 1F.

If you would like to help, visit https://www.usher1f.org/cereal-challenge.html