Rett Syndrome Research Trust

09/02/2026

C terminal deletions collectively account for 10% of Rett cases. But not all of them actually cause Rett symptoms and a recently published paper by Jacky Guy explains why. Jacky was the scientist behind the 2007 Bird lab reversal paper which was the impetus for RSRT’s focus on genetic medicines. Nearly twenty years later, Jacky is still uncovering MECP2’s secrets.

Two nearly identical mutations produce two different endings to the MeCP2 protein. One is harmless. The other marks the protein for destruction, and accounts for roughly 10% of Rett syndrome cases.

08/31/2026

A huge thank-you to Dani and her family for hosting Noelle’s 2nd Annual Purple Lemonade Stand! 💜🍋

They went all out with a donation-based yard sale, several creative purple drinks (with Boba and Cold foam), the cutest matching T-shirts and employee matching to make every donation go even further. Such a genius way to bring the community together for Rett syndrome research!

We are so grateful for the time, creativity and heart they poured into raising funds for Rett syndrome research. Thank you, Dani and family! 💜 Dani Heil

08/31/2026

The Connor family's Happy Hour to Help End Rett is back for its 10th year, bringing friends, neighbors, and supporters together for an evening that's become a community tradition.

Who would've guessed that a happy hour could help move Rett research forward?

If you're in New Jersey or the Philadelphia area, mark your calendar.

Sometimes the best fundraisers begin with just doing something you love!

Believe in Brynn

Rett Syndrome Research Trust advances medical research, news and information about Rett Syndrome.

08/30/2026

Indiana Rett families - Addie, Rose’s mom, and her family would love to welcome you to their upcoming event: On an Adventure to Cure Rett: A Carnival for Rose! They are especially excited for the chance to meet other Rett parents and families in person. 💗

Come enjoy pony rides, face painting, co****le, a bounce house, caramel apples, food and more - all while supporting cures for Rett!

08/29/2026

🍺 A brewery. A custom purple beer. A community coming together for Rett.

Four weeks from today, Pittsburgh-area families will host the very first Riverfront Rally for Rett.

It's one more reminder that fundraising doesn't have to look the same. Every family has different connections, different interests, and different ideas. That's what makes these events so special.

If you're in the Pittsburgh region on September 26, this is one you won't want to miss.

Join us for the Riverfront Rally for Rett — a daytime celebration on the banks of the Allegheny River in support of Rett syndrome research.

08/26/2026

We have an amazing opportunity to raise major funds through a Chick-fil-A promotion for October awareness month. Go to your local Chick-fil-A store, tell the owner you hope they’ll join the Mac & Cheese for Molly fundraiser, and hand them a flyer. That’s it! So easy. 50 stores are already signed up and raised over $100,000. With 3,000 Chick-fil-A stores around the country the sky is the limit! Pease ask your local store(s) by Sept 15th to allow time for marketing materials to arrive by October.

¢35 from every mac & cheese sold this October funds Rett research. One in-person ask before Sept 15 brings it to your town.

08/26/2026

The Central Valley showed up for Rett! 💜🍋

A huge thank you to Maria, Marbella, and family for hosting such an amazing Purple Lemonade stand in Merced, California. Their stand was absolutely adorable, and we are so grateful to this family for making a stand for Rett!

More videos from their incredible day are coming soon. "When life gives you lemons, make them purple!"

There’s still time to make your stand. Who’s next? 💜

08/25/2026

A next-gen delivery technology would allow genetic medicines to reach more cells throughout the brain. More brain cells targeted should result in more significant symptom improvement.
In this Minute with Monica, hear why RSRT’s new collaboration with Italian biotech startup Reverta offers reason for optimism.

Watch to learn more.

08/24/2026

Reverse Rett Washington DC is on October 23. This is an event on a mission. Every year for the past nine years it has grown, raising more funds and inspiring more people. It's also an event with a remarkable spirit! This year's theme is: Lace up for a cure; Sneaker Soiree.

Interested in getting involved? We'd love to have you. Contact [email protected] to learn more.

We’re so excited for our 2026 gala. Your past support has moved the needle on Rett syndrome research in a big way!