International Rett Syndrome Foundation (IRSF) - Regional Representatives Program

Regional Representatives Program

Find a Rep Near You!

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 This e-mail address is being protected from spam bots, you need JavaScript enabled to view it 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.

State	First Name	Last Name	City	Email	Phone
Alabama	Marilyn	Archibald	Reform	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	334-382-9128 205-792-7534
Alaska Info Page	David & Melissa	Luntz	Delta Junction	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	907-388-3497
Arizona	Cate	Galyon	Tucson	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	520-647-9664
Arizona Info Page	Tracy	Espinoza	Tucson	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	520-869-6812
Arkansas	Dewayne	Gregory	Fort Smith	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	479-459-8350
California (Northern)	Angela	Herrick	Chico	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	831-461-1064
California (Southern) Info Page	Sherri	Brady	Whittier	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	562-619-0109
California (Central)	Erica	Robertson	Pleasant Hill	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	925-984-4818
Colorado	NA	NA	NA	NA	NA
Connecticut	Ariane	McMahan	Fairfield	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	203-319-1758
Delaware	Joe	Houghton	Newark	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	302-369-1138
District of Columbia	Ann-Marie	Kinzler	Manassas Park	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	703-335-0911
Florida	Dan	Frisbie	Milton	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	850-626-1017
Florida	Henry & Carolyn	Perez	Wellington	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	561-792-9173
Georgia	Ashley	Alexander	Macon	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	478-747-7420
Hawaii	Cyrene	Tito	Ewa Beach	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
Idaho	Kandy	Hallstrom	Eagle	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	208-286-0993
Illinois	Mick & Diane	Ross	Schaumburg	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	847-524-7540
Indiana	NA	NA	NA	NA	NA
Iowa	Charlie & Crystal	Weaver	Douds	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
Kansas Info Page	Shannon	Stoiber	Olathe	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	913-393-0747
Kentucky	Jess	Steventon	Fort Campbell	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	270-908-6680
Kentucky Info Page	Sarah	Cayce	Hopkinsville	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	270-348-3843
Louisiana	Nakisha	Whittington	Vacherie	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	225-265-7625 225-636-7420
Maine	Katie	Guernsey	Bangor	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	207-745-0379
Maryland	Liz	Calabrese	Saint Leonard	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	410-474-2664
Massachusetts	Pat & Leslie	Courtney	Worcester	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	508-757-9952
Michigan Info Page	Lisa	Rushin	Alma	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	989-463-3474
Minnesota	Liz	Wright	Vadnais	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	651-649-0104
Mississippi Info Page	Diane	Lee	Petal	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	601-582-5100
Missouri	Joyce	Opinsky	Chesterfield	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	314-878-0868
Montana Info Page	Penelope	Price	Emigrant	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	406-600-9268
Nebraska Info Page	Lisa	Larsen	Arthur	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
Nevada (Southern) Info Page	Cordelia	Albanese	Las Vegas	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	702-573-9029
Nevada (Northern) Info Page	Evie	Swan	Reno	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	775-852-3059
New Hampshire Info Page	Corry	Hughes	Jefferson	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	603-586-1111
New Jersey Info Page	Mike & Leslie	Greenfield	Freehold	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	732-462-8476
New Mexico	Joshua	Poulsen	Albuquerque	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	602-791-8572
New York (NYC Area)	Dinorah	Lombana	Forest Hills	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	718-261-4323
New York (Upstate/Central) Info Page	Shirley	Hurlburt	Liverpool	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	315-457-6163
North Carolina Info Page	Melanie	Gregory	Hubert	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	910-548-4355
North Dakota	NA	NA	NA	NA	NA
Ohio (Central)	Carole	Cushman	Dublin	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	614-356-3728
Ohio (Northern)	Cathy	Kenngott	Akron	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	330-794-6574
Oklahoma Info Page	Matt & Amy	Cummins	Enid	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	580-540-8316
Oregon Info Page	Joey	Razzano	Portland	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	503-460-3035
Pennsylvania (Eastern)	Mark & Maureen	Charamella	Springfield	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	610-766-2930
Pennsylvania (Western) Info Page	David & Tara	Freudenrich	Pittsburgh	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it Click here to email	412-281-6393
Pennsylvania (Western) Info Page	Joe and Julie	Peden	Centerville	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	814-827-7679
Rhode Island	Ariane	McMahan	Fairfield	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	203-319-1758
South Carolina	Samantha	Prinsen	Beaufort	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	843-252-8632
South Dakota	Gina	Hale	Dell Rapids	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	925-698-6039
Tennessee	Jess	Steventon	Fort Campbell	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	270-908-6680
Tennessee	Brent & Anita	Poulton	Goodlettsville	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	615-859-0080
Texas (Northwest)	Laura	Rogers	Stratford	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	806-366-3666
Texas (South Central) Info Page	Susan	Rangel	Spring	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	281-430-4325
Texas (Northeast) Info Page	Vanessa	Peace	Carrollton	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	972-977-5021
Utah Info Page	Rhett & Heidi	Burnham	American Fork	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	801-722-0292
Vermont Info Page	Corry	Hughes	Jefferson	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
Virginia	Ann-Marie	Kinzler	Manassas Park	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	703-335-0911
Virginia	Petrina	Pate	Salem	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	540-375-6406
Washington	Rebecca	Christofferson	Everett	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	425-361-6422
West Virginia	Donna	Corley	Morgantown	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	304-680-2017
Wisconsin	Patty	Mevis	Green Bay	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	920-662-1627
Wyoming Info Page	Myrna	Johnson	Cheyenne	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	307-214-4979
International Representatives
Caribbean	Joy	Waldron	St. George, Barbados	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	917-460-8173
Special Issues Representatives
Adult Issues Specialist	Clifford and Judy	Fry	College Station, TX	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	979-696-0866
Adult Issues Specialist	Lamar and Sally	Beaty	Houston, MS	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
Bi-Lingual Representatives
Spanish Representative	Paco	Rangel	Spring, TX	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	713-446-3500
Spanish Representative	Zenaida	Jimenez	Dixon, CA	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	707-678-3454

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!
Find out if your state has a page! Here are a few:

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 This e-mail address is being protected from spam bots, you need JavaScript enabled to view it or by calling 508-362-2220 with any questions.

Click here to learn more about becoming a Regional Representative for a vacant state.

Click here if you are a Regional Rep.

Click on any thumbnail image below.