September 19, 2014 Invests 1.5M

The Board of Directors has awarded $1.5M to support 10 new grants to further translational research, launch the neuro-habilitation therapeutic program, and fund clinical research.

August 4, 2014

Where Care meets Cure: The growth of Rett Clinics & Centers in North America

By early 2015, will have helped inspire the development, growth and networking of 18 Rett specialty centers in North America that support our children & believe that care & cure are linked.

July 24, 2014

WELCOME Back a Leading Board Member

We are proud to welcome long time Board of Directors member, Gordon Rich, back to the Board of Trustees. Gordy and his wife Anne created the Kelly Rich Rett Research Foundation in 1997.


Upcoming events

Home Run Derby (CA)
Fri, 26 Sep 2014
All Day Event

Portland Strollathon (OR)
Sat, 27 Sep 2014
All Day Event

Kansas Strollathon
Sat, 27 Sep 2014
All Day Event

San Antonio Strollathon (TX)
Sat, 27 Sep 2014
All Day Event

Raleigh Strollathon (NC)
Sat, 27 Sep 2014
All Day Event

Cape Cod Strollathon (MA)
Sat, 27 Sep 2014
All Day Event

Walk the Lake for Blake 5k Walk/Fun Run (AL)
Thu, 02 Oct 2014
All Day Event

Connecticut Rett Angels Golf
Fri, 03 Oct 2014
All Day Event

Georgia Strollathon
Sat, 04 Oct 2014
All Day Event

Reno Strollathon (NV)
Sat, 04 Oct 2014
All Day Event

Central Florida Strollathon
Sat, 04 Oct 2014
All Day Event

Walk n' Roll (MO)
Sat, 04 Oct 2014
All Day Event

Bay Area Water Utilities Softball Tournament
Sat, 04 Oct 2014
All Day Event

New Jersey Strollathon
Sun, 05 Oct 2014
All Day Event

You may have seen my story...

But even if not, I think it will sound familiar.

I'm Norah, I am five years old and I have Rett syndrome. My body and hands don’t listen to me and I cannot talk. But I am smart and understand you.

My friends are raising funds to help develop a miracle drug for those like me living with Rett syndrome.

Video created by parents, Megan and Josh Lowe.

Make a Gift


Rett Syndrome Handbook

Often called the “Rett Syndrome Bible”, all the information you need for your journey

Download the handbook [PDF - 407MB]

Available at the online store

Family Conference

Find valuable resources from our "Opening Doors to Discoveries" Family Conference. Check back for speaker handouts and recordings.

Learn more

Get 1:1 Support

Connect with our Family Empowerment Team

A parent can provide emotional support and information to you and your family

Learn More

Find your Regional Rep

Connect with a parent volunteer to learn about the resources in your area.

Learn More

Signature fundraisers and events


Strollathons are's signature fundraising events.


Rett Racers

Rett Racers is one of's signature fundraising programs.


Lemonade Stand for Rett

The Lemonade STAND for Rett fundraiser is perfect for anyone new to fundraising.

Start your own Lemonade Stand

Featured events

Casting 4 A Cure

Don't miss the Casting 4 A Cure event August 21-24, 2014 in Victor, Idaho. The annual fundraiser began when Bill and Beth Farnum combined two of their passions, fly fishing and fundraising, to help their daughter, Ella, live a life up to her full potential.

Event information

Rett Angels Golf Tournament

Join us on Friday, October 3rd, 2014 for our annual tournament in honor of those with Rett syndrome.

Event registration

October Awareness Month

October is our time to make a difference! As the leading cause of severe impairment in girls, it occurs worldwide in 1 out of every 10,000 female births, yet many still have never heard of it; Help us change this.

Learn more


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