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SPEIGLETOWN, N.Y. (NEWS10) — Families across the Capital Region came together on Saturday to raise money and awareness for a rare neurological disorder called Rett Syndrome. Saturday was the Reverse Rett Upstate New York Committe’s fourth annual Reverse Rett Fall Festival.
“Rett syndrome (RTT) is a rare and devastating neurodevelopmental disorder that impacts nearly every aspect of an individual’s life, including their ability to speak, walk, eat, and even breathe,” according to the International Rett Syndrome Foundation.
Symptoms of Rett Syndrome can appear as early as six months old. For parents, that reality can be heartbreaking. News10’s Tyanna Xavier spoke with co-founders Alyssa and Rick Otis who started the Reverse Rett committee in Upstate New York because their child Barret is living with Rett Syndrome. They told her some of the round the clock care they have to provide for him.
“Barret is full care, so he depends on us for everything. He’s non-ambulatory, non-verbal. So, from the moment he wakes up, we get him out of his bed. He’s got respiratory treatments that he does three times a day. We have some great therapists that come to our house and provide special education and physical therapy, speech therapy, occupational therapy. [We] just added music therapy on to that.” said Alyssa Otis.
There are other Reverse Rett committees, but since Alyssa and Rick have started this one in Upstate New York four years ago. Committee members believe once started the couple took it head on.
“As soon as they found out and he (Barret) got his diagnosis, they immediately jumped right into, you know, getting connections with research teams and figuring out how they can find ways to improve this disease for these children,” said Francesca Lilly, who is part of the planning committee.
Due to that go getter attitude they have accomplished some big milestones for the cause.
“Over the last three years, we’ve raised $1.2 million, which is absolutely incredible. Last year, we had 2,000 people out for this event. This year we’re expecting 2,500,” said Rick Otis.
All of that money goes to the Rett Syndrome Research Trust to raise money to expand research and raise awareness.
“The biggest thing is just raising awareness and also connecting with families who also are experiencing similarities not only just, you know, with the Rett syndrome, but also any other parents who are just struggling with anything with their children,” said Danielle Manupella, also from the planning committee.
Many people were there with their families experiencing everything the festival had to offer such as corn hole tournaments, face painting for kids, live music, a huge slide, rock climbing and because we are entering that time of year pumpkin painting was only right to include in Saturday’s festivities.
According to the Reverse Rett Committee there are only five cases of Rett syndrome but there are many more cases all around the world. If you would like to learn more about Rett syndrome or donate to the cause, go to Reverse Rett Upstate New York.
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Tyanna Xavier
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