The Regional Representative Program has been established to provide emotional support, information and resources to families affected by Rett syndrome. It is used as a vehicle to promote family gatherings and fundraisers to support IRSF’s mission. It is an integral part of IRSF. The program has greatly expanded over time, closing in on acquiring a Regional Rep for each state in the US. IRSF is thrilled to have such a dedicated group of individuals on board serving families across the country. IRSF applauds each Rep for their hard work and commitment to the program. Please contact the Rep in your state TODAY!
For more information about the program please contact Jennifer Endres at jendres@rettsyndrome.org or by calling 508-362-2220.
IRSF applauds each Rep for their hard work and commitment to the program. Please contact the Rep in your state TODAY! If you are not located in the US, please contact the organization closest to you.
Mission Statement
The Regional Representative program strives to provide supportive local contacts for families affected by Rett syndrome, promote public awareness and knowledge of RTT and IRSF, support fundraising efforts that will promote research towards finding a cure for RTT and connect families through gatherings and outreach.
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Find your state's IRSF Regional Representative in the table below.
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NEW: State Facebook Pages!
Some of your Regional Representatives have created state Facebook pages! The mission of these pages is to connect the families of each state impacted by Rett syndrome in a place where many of you already are – FACEBOOK! Utilize your state’s page to chat about Rett syndrome issues, share in the excitement of IRSF events and connect with individuals near YOU. This page will be primarily run by you, so feel free to post and comment as you’d like. IRSF will moderate as needed; however YOU decide how to best use this page for your state! Search for your state’s page by “(State) IRSF Rett Syndrome Families.” You may have to request to join the page before you can start posting!
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Interested in Joining the Regional Representative Team?
IRSF is looking for motivated, dedicated and passionate people to become Regional Representatives. Not a parent? Not a problem! Periodically IRSF appoints grandparents, close family friends and older siblings as Regional Reps! Please contact Jennifer Endres at
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or by calling 508-362-2220 with any questions.
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