Special Events

“Planning a fundraiser for IRSF is so empowering. Often Rett syndrome can make us feel helpless, since there is so little we can do to alter its course. But, planning a fundraiser puts us back in the driver’s seat. Any amount raised, no matter how big or small, takes us one step closer to the cure. It is so worth all of the effort.” ~Jane, MA

Receiving the diagnosis of Rett syndrome is not easy. It can be a sad, dark and isolating period until everyone adjusts to life and decisions are made about how to proceed. Each family is different and will cope in their own unique way. For some, both newly diagnosed and the more experienced, hosting or participating in a fundraising event can bring comfort and healing as well as a sense of community.

Hosting an event or joining an event committee is a commitment to hard work, but you will be rewarded with the knowledge that the dollars you are raising are helping to move Rett syndrome research forward. The connections you make with other families and volunteers within the Rett syndrome community will be your support, even as you are supporting them.


IRSF’s Signature fundraising event, the Strollathon, was introduced in 2004 with four events. Volunteers now host Strollathons in more than 25 communities around the country and our presence continues to grow. Strollathons are, first and foremost, fundraising events. They serve an important additional role building awareness and a sense of community among local Rett families and between the local families and society at large. If you are interested in bringing a Strollathon to your community or joining the committee leading your existing local Strollathon, contact Marcy Fritter at (301) 961-1539 or events@rettsyndrome.org.

To register and start fundraising for a Strollathon in your area, visit www.Strollathon.org.

Rett Racers

IRSF’s Signature fundraising program, the Rett Racers, launched in 2012 with participants racing in five distance or endurance races around the country. If you have signed up for a race and would like to fundraise while you train, this is the program for you. Rett Racers are participating in half and full marathons, obstacle events, bicycle races, triathlons and more. Visit www.RettRacers.org to see where our Rett Racers will be participating and to register for the program. Contact IRSF at (800) 818-7388 or events@rettsyndrome.org.

Other Events

IRSF volunteers are hosting hundreds of events around the country. Some are large, supported by IRSF staff and resources, but most are family and community based, undertaken because of a great idea and local support. If you are interested in hosting a new event in your area, IRSF encourages you to consider an event related to an activity with which you are familiar, and to evaluate your time available to commit and local resources. Your greatest success will come from an event that mirrors your interests and resources. Visit the Plan an Event page for more information on choosing the right event and to view available resources.