Rett Fest is Saturday. Here is how a firehouse barbecue became a million-dollar mission.

Every town has a day that belongs to it. Ours falls on a Saturday in September, on the lawn of the firehouse on Route 40, and it started because one family decided that a diagnosis was not going to be the end of the conversation.

Rett Fest is Saturday, September 19, 11 a.m. to 5 p.m., at the Speigletown firehouse, 146 Speigletown Road. Admission is free. Here is what you are walking into, and why it matters more than the cornhole bracket suggests.

Barrett

Barrett Otis was born in January 2021. Just before his first birthday, a genetic test found a mutation in a gene called MECP2, and his parents, Alyssa and Rick Otis of Speigletown, were handed a diagnosis most people have never heard of: Rett Syndrome.

Rett is a severe neurological disorder. Children develop normally for about a year, then regress, losing hand use, speech and often the ability to walk, and picking up seizures, breathing irregularities and digestive trouble along the way. The fund’s own description of Barrett today, at five years old, is unflinching: he is fed through a g-tube, depends on a ventilator, and has seizures. He also has three older siblings who, in his parents’ words from an early interview, adore him.

There was a second layer to the diagnosis. Rett was long thought to affect only girls. The gene sits on the X chromosome, and for decades the medical assumption was that boys with the mutation could not survive to birth. “Until recently, Rett Syndrome was thought to occur exclusively in females,” the fund writes. The Otises went looking and found dozens of families raising boys with Rett, mostly outside the research spotlight. That discovery is now the fund’s mission statement: advocacy and research funding for males with Rett Syndrome.

The barbecue that got out of hand

In the fall of 2022 the family decided to hold a fundraiser. The plan was modest: a casual barbecue at the local firehouse, two bands, a couple of food trucks, a bounce slide and a dunk booth for the kids, raffle baskets, and whatever sponsorships they could talk local businesses into. They gave themselves six months and a committee of friends.

About 1,500 people came. The Rett Syndrome Research Trust, which received the proceeds, later wrote it up as a case study in small-town fundraising and quoted the number that stunned everyone involved: more than $320,000 in a single afternoon, from what the Otises called “the largest crowd our local firehouse has ever seen.”

“I promise you will be surprised by the outpouring of love and support from your community,” Rick Otis told the trust’s readers.

It kept growing. Three festivals in, the running total was close to a million dollars, enough that the trust counted the 518 area code among the largest contributors to its national Roadmap to Cures campaign. Last September’s fourth festival set the records that still stand: 2,612 people through the gates and more than $325,000 raised, with the first motorcycle motorcade rolling in to open the day. Over four years the total passed $1.2 million.

What changed this year

The name, and the plumbing behind it. Over the winter the Otises established the Barrett D. Otis Charitable Fund as its own registered 501(c)(3) nonprofit, and the festival, formerly the Reverse Rett Upstate NY Fall Festival, became Rett Fest. The family said the change lets them “maintain closer, hands-on control over the vital Rett Syndrome research we fund,” with a specific eye on treatments for boys.

The timing is not accidental. Rett research is at the most hopeful point in its history. The first drug ever approved for the disorder, trofinetide, reached patients in 2023. Two gene therapies designed to fix the underlying MECP2 problem are now in late-stage trials: Neurogene’s NGN-401, which the FDA gave Breakthrough Therapy status last fall after early participants showed durable gains, and Taysha’s TSHA-102, both of which expected to finish enrolling their pivotal studies this year. Whether and when those treatments reach boys like Barrett is exactly the kind of question a small, focused fund can push on.

Your plan for Saturday

• 9:30 a.m., Ride for Rett. The motorcycle ride leaves from 40 Leversee Road, the Fane and C.D. Perry offices just down the hill, and arrives at the firehouse by 11 to open the festival. No fee to ride; donations encouraged. Riders should register in advance through the form on the fund’s events page. If you are not riding, Route 40 around 11 is a good place to stand and wave.
• 11 a.m., gates open. Free. Food and drink, live music on the grounds all afternoon, raffles and a 50/50 drawing.
• Kids. Face painting, balloon art, a rock-climbing wall and slides. Plan on losing them to the slide for an hour.
• The cornhole tournament and the dunk tank. The two most reliable sources of both money and blackmail material. Bring cash.
• 5 p.m., wrap.

Parking fills along Route 40 and the side streets; give yourself a few minutes and watch for the bikes. Sponsorships for this year closed in August, but donations do not, and the fund’s site takes them year-round.

Why this is our day

The firehouse gives the lawn. Local businesses put their names on the tents. Somebody’s uncle runs the grill and somebody’s teenager runs the raffle table, and 2,600 people who mostly know each other show up and hand over three hundred thousand dollars for a five-year-old who cannot tell them thank you. Then they do it again the next year.

Barrett is one of roughly 350,000 people living with Rett worldwide. He is the only one who gets a festival on Route 40. See you Saturday.

Sources: the Barrett D. Otis Charitable Fund’s mission and events pages and its 2026 announcement; the Rett Syndrome Research Trust’s March 2023 article “Fundraising in Small Town, USA” for the first festival’s totals and the Otis quotes; CBS6 Albany (August 2025) for the three-year total and Roadmap to Cures; WNYT for the worldwide figure; our coverage of the 2025 festival and the August rebrand announcement. Research status from Neurogene’s and Taysha’s public trial updates and the FDA designation announcement; the trust’s description of Rett is paraphrased. Confirm the day’s schedule with the organizers.