In March 2017 we launched our strategic research plan, Roadmap to a Cure. The culmination of decades of research, the plan describes four cutting-edge approaches that could cure Rett by attacking the root cause of the disorder. Of these, gene therapy is the closest to the clinic and will be our lead program. The Roadmap has a three-year timeline and a cost of $33 million. 

Since our launch in 2008 we have raised $66 million, almost none of which has come from corporations, large foundations or random philanthropists. Nearly every dollar has come from affected families and their networks of relatives, friends, colleagues and neighbors.

Do you want a cure for Rett? If so, we invite you to play a vital role by fundraising for Roadmap to a Cure.

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Are You In?

We have $2.6 Million to raise for Roadmap to a Cure. Now's the time to be part of changing your child’s or loved one’s life. Don’t wait! Take action TODAY. Here’s what you can do...

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"Sadie’s fate is not sealed. This is what RSRT's Roadmap to a Cure means to our family. Curing Rett Syndrome is the mission of our lives and the Roadmap has our full support." Stephanie & Andy Bohn

Start Your Own Event

Anyone can start an event – parents, grandparents, brothers and sisters, aunts and uncles, or family friends. An event can be whatever you like – a gala, a happy hour, a picnic, or cocktails in your home. We will help you every step of the way including graphic design, save the dates/invitations, e-blasts, event webpage and more. Contact Tim Freeman, our Chief Development Officer, to get started.

More Information Get In Touch

Call Tim Freeman :


event myths vs event reality

“I’m not wealthy and neither are my friends.”

You don’t need to be wealthy at all, and neither do your friends and contacts.  It’s not just the wealthy who give. Everyone will happily donate, if given a reason through an event.

“I’m not comfortable asking friends and family for money.”

People want to give to our cause because it’s compelling and promising. An event gives them a way to do it. The average US family gives $3,000 to charity a year. If you don’t ask, someone else will.

“There’s no big event space near me to hold a gala.”

An event doesn’t have to be a gala. It can be anything you envision – barbeque, picnic, happy hour, run or walk, cocktail gathering in a home or community center, concert or art show.

“I have too much going on in my life.”

Events do take some time, but RSRT makes it easy by helping every step of the way. Most events have committees made up of friends and family that share the work and time.

“I don’t have a daughter with Rett Syndrome.”

Anyone who wants to make a difference can start an event—parents, grandparents, brothers or sisters, aunts and uncles, cousins, friends of affected families.

“I’ve never held an event before so I wouldn’t know what to do.”

We’ll be with you every step of the way to make your event a success. A team of professionals with years of experience at your disposal.

We have our own crowdfunding platform: RettGive. We can get a page up for you quickly and easily. All you need is a short paragraph about your child and a few photos or a brief video. Then you’re off and running with your own campaign. Explore our current campaigns and get a sense of what they’re like. Contact us to get started.


Become a Roadmap Trailblazer!

Trailblazers are families, individuals, and Rett organizations that have made generous multi-year pledges in support of Roadmap to a Cure. Trailblazer pledges start at $10,000. Contact us to learn more or to make a pledge.

Meet the trailblazers

Connections, connections, connections!

Do you know someone who is connected to a foundation or is a philanthropist?
They are looking for good causes to support. We’ll help brainstorm ways to approach them.


Whether you live in the U.S., Europe, South America or elsewhere, we need you. We cannot rely on governments or industry or anyone else to cure our children. It’s up to us. Help us change lives and complete the form below.

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