Receiving the diagnosis of Rett syndrome is not easy. Often times it is a sad and dark period, until everyone adjusts to life and decisions are made about how to proceed. Everyone is different and will cope in various ways…some will decide being proactive is the best route to take. Planning an event and fundraising are two of the most proactive avenues one can venture down. They can be time consuming and hard work, but promise to be rewarding and help to bring comfort and healing. Contact the understanding, helpful and supportive staff today at the International Rett Syndrome Foundation. We are here to help you heal!
Fundraising has become a large part of many Rett parents' lives. Raising crucial research dollars on behalf of your daughter can serve as a way to "heal" and every dollar raised brings us one step closer to the cure we seek. Below you will find quotes from IRSF parents that host events and fundraisers in their community. Now more than ever we need the support of our girl's parents and the community - now is your chance to make a difference not only in your daughter's life but in the lives of all the girls and women across the country suffering from Rett syndrome.
If you are interested in hosting or helping to plan an event on behalf of IRSF please click here to be redirected back to our “Host an Event” section.
Hosting an IRSF Event has helped so many parents on their journey with Rett syndrome. Below are some quotes from Event Chairs and a few pictures of their events and families!
My favorite part of chairing the Strollathon is getting all the RTT families together. We had over 20 families attend our last event. When all these beautiful girls and women line up for a group photo, along with their amazing families, it’s incredibly moving and rewarding.
Joyce, Missouri
Larry, Lilly (RTT) and Joyce Opinsky at the
1st Annual St. Louis Strollathon
Raising money for Rett syndrome research and family support is what we’re doing. But bringing families together, and closer, and having fun doing it is really what it’s all about!
Dan, Minnesota
Dan with daugther Sara (RTT) and wife Lisa
It is a great feeling, writing the check, sealing the envelope and saying a prayer...knowing that this check to IRSF could be the check that funds a cure for our girls. If it is only to build the steps to the ultimate goal, that is equally great!
Nancy, North Carolina
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, Massachusetts
The Boston Festival of Food and Wine Chairs -
Chuck & Paula Curley, Mike & Jane Joyce and
Ariane & Christian McMahan
Like all of you, our daughter's diagnosis wasdevastating. We were thrilled to learn about the active Rett communityand pledged to get involved however possible. Over the years we havehosted numerous events to raise money seeking treatments and a cure.The involvement of family and friends in a united cause has beenextremely gratifying for all and we know we are playing our part in thesearch for a cure.
Paula, MA
There are so many things about Rett Syndrome that I can't change. Coordinating events for IRSF like Strollathons, picnics, golf tournaments - these are fun things with a purpose that I can do. Is it exhausting - yes. But is it worth it? You bet!
Joey, Portland
Joey's Strollathon 2009 - Portland, OR
