Interview: Learn More About Reverse Rett Fall Festival This Saturday!

Reverse Rett Upstate New York Fall Festival 9/20/2025 11-5pm Speigletown Fire Department Route 40 Troy, NY
Interview: Rick Otis
By: Rob Smittix

RRX: I got some information sent to me about Reverse Rett Upstate New York Fall Festival and that’s what nudged me to reach out to you. People like myself, don’t really know much about Rett Syndrome, if you could please explain it a little bit for us, I’d appreciate it.

RO: Yeah, so our youngest son Barrett, he’s 4 and he has Rett Syndrome. Rett Syndrome is a severe neurological disorder that’s caused by a gene mutation. So what happens is the spontaneous gene mutation in utero, so… kids with Rett Syndrome are born with it. And it affects pretty much all of their bodily systems, so it can cause seizures, it affects their ability to talk, it affects their ability to walk, it causes breathing problems, it also causes heart issues. It’s a central nervous system disease and it affects everything in the body from head to toe, unfortunately.

RRX: Now, is rare or is it a common thing?

RO: It is a rare disease, so it’s not common. There’s 5 children in the Capital Region that we know of that have Rett Syndrome, including our own son. There’s about 20,000 individuals nationwide with Rett Syndrome and about 250,000 around the globe.

RRX: Oh, all right, yeah, I didn’t really know, so I appreciate you filling me in on that. But it’s a really moving and touching thing that you’re doing and obviously, motivated because of your son Barrett. It’s really nice that you’re putting this thing together, have you done this before?

RO: It is an annual thing. This is our 4th annual. When we started it 4 years ago, it was something that we decided we wanted to raise money to help find a cure for Rett Syndrome. We wanted to do something to bring the whole community together and something that would be fitting for all ages. Barrett has 3 other siblings and the oldest is 8. We wanted to make sure that they were involved as well.

RRX: Oh, that’s definitely commendable. And the Rett Syndrome research that you’re helping fund with these donations, makes me think about my Mom who has lung cancer and my band was like… we should maybe raise money for the Lung Cancer Association or whatever it’s called. They didn’t even want to bother with us unless we could guarantee them $10,000 and I was like… that just sounds strange. But I’m assuming that your experience with the Rett Syndrome research has been much easier to work with.

RO: I’m sorry to hear that happened that’s terrible. Yeah, so they’re an organization based out of Connecticut but they operate worldwide. They take in any and all donations and all money that they receive goes directly towards research for a cure for Rett. As of today there is no cure for Rett Syndrome, but there’s been a lot of progress through research and science. We all believe that we will have a cure one day, but this association, they work with us and it doesn’t matter how much we raise. Thankfully we’ve been very successful with our fundraiser. Which I can get into numbers if you’re interested but they’ll work with anybody and everybody. They’ve been very supportive.

RRX: That’s the way it should be. So the Free Family Fun Day, tell us a bit about the event.

RO: It’s almost like a fair in some ways, it’s outdoors in a huge lot behind the Speigletown Fire Department, which is just north of Troy on Route 40. There’s lots of activities. First thing in the morning we’re doing a motorcycle motorcade to kick off the event at 9 o’clock. The actual festival starts at 11am. We have several food trucks, an ice cream truck, kettle corn, we have a beer truck for food and beverage… for music we have 3 bands going all day long from 11 a.m. to 5 p.m. 3 really good bands! Soul Provider, The Fas4ward band and The Schmooze!

RRX: These are all great bands!

RO: Yup, so we’ll have live music all day. There’s a lot of activities. We have a cornhole tournament going on during the day. We have a dunk tank. We have lots of different raffles. We have over 80 raffle baskets, we have silent auction items, we have 50/50. There are lots of ways to win prizes and go home with money! Obviously, the proceeds go towards Rett Syndrome Research Trust. From a kids’ activity standpoint, we have a bunch. We have a rock wall that’s provided by the Albany County Sheriff’s. We have a huge dirt pile/dig pile where we bury a bunch of treasure in for little kids and let them dig around all day, which they love.

RRX: That’s fun!

RO: We have arts and crafts, face painting, we have 2 bouncy slides for the kids. And a lot of other activities too!

RRX: Oh, this sounds great. It sounds like it’s gonna be a fun day and really a celebration. People are gonna have a great time there. Sounds like the kids are gonna have a tremendous time. I love this, man.

RO: We wanted to make it inclusive for everybody to bring their whole family down if they want to. It’s very… come and go as you please. I know Saturdays in the fall can be very busy but a lot of times people will stop down for a couple hours and then go on to their sports or whatever they have going on that day. It’s really cool and actually last year we had 2000 people attend and we’re hopeful to bring it up to 2500 this year.

RRX: I sure hope so. Anything else to add to help encourage folks to come out for this great cause?

RO: Come out, have fun, come and go as you please, all the proceeds go towards research for a cure. What else? Our community in the Capital Region has done an incredible job helping us. We’ve raised over 1.2 million to date, over the last 4 years, which is just phenomenal.

RRX: I can’t count that high. That’s incredible.

RO: That’s right, you run out of fingers.

RRX: Well, you’re doing great work Rick, I appreciate you taking the time with me today.

RO: Rob, I appreciate it. Thank you for your support and all your help.