You are not alone. There are many ways to connect with others on this journey. Here are some of the ways that you can connect with others at

State Family Empowerment Team Representatives

Every state has a dedicated volunteer who plays a valuable role in empowering our families with both information and connectivity. These representatives can help you find resources in your state and connect with other families in your area.

State Name Email Address Phone Number
Alaska David Luntz 907-590-9140
Alabama Susan Lee 205-910-2353
Arizona Catherine Galyon 520-704-3787
Arizona Naomi Carlisle 602-317-6372
Arkansas Jessica Williams 501-472-3248
California Jenny Mosca 760-492-3989
California Danny Warner 949-521-2665
California Paige Nues 510-499-3858
California Sherri Brady 562-619-0109
Colorado Heidi Hedges-Greenall 206-484-7365
Connecticut Ariane McMahan 203-520-5452
Florida Karli Hughes 863-899-0784
Florida Nikki Johnson 850-686-5208
Georgia Jessica Kiefer 678-978-1115
Hawaii Vickie Kirihara 808-383-5948
Idaho Shauna Murray 208-890-5350
Illinois Shelby Sawyer 815-823-3760
Indiana Regan Zwald 317-607-9589
Iowa Charley Weaver 641-919-9100
Iowa Crystal Weaver 641-936-7257
Kansas Shannon Stoiber-Darrah 913-302-7498
Kentucky Anetha Sanford 859-552-2122
Louisiana Pam Brady 985-212-5600
Maryland Elizabeth Calabrese 410-474-2664
Maine Danielle McAllister 207-743-9698
Maine Evie Swan 775-200-8788
Michigan Lisa Rushin 989-285-5994
Minnesota Matt Dahms 763-222-4995
Minnesota Ashley Dahms 763-607-9963
Minnesota Connie Lindberg 612-247-3210
Missouri Joyce Opinsky 314-346-1323
Missouri Amanda Sommer 636-795-8195
Mississippi Misty Newman 601-754-4096
North Carolina Kristin Barton Stephenson 919-453-4658
North Carolina Gwen Noecker 919-426-5554
North Carolina Caitlin Barbier 910-638-8803
North Dakota Melinda Gebhard 701-213-7151
Nebraska David and Terri Larson 562-619-0109
New Hampshire Michelle Boom 207-514-4044
New Jersey Leslie Greenfield 732-462-8476
New Mexico Alicia Cortez 505-429-2221
Nevada Brenda Turley 775-830-3556
New York Shirley Hurlburt 315-447-5200
Ohio Jennifer Martin 312-882-4402
Oklahoma Renee Farris 405-824-2458
Pennsylvania Julie Peden 814-657-5005
Pennsylvania Maureen Charamella 610-766-2930
South Carolina Hollis Gunn 843-847-1248
South Carolina Tonya Hanna 864-848-1323
South Dakota Nicole Bacan 605-670-9831
Tennessee Jaimie Patrick 515-297-4755
Texas Vanessa Peace 972-977-5021
Texas Denay Hooks 325-650-2408
Utah Anna Dance 801-897-1400
Vermont Shelley Waterman 802-343-6775
Virginia Ann-Marie Kinzler 703-335-0911
Virginia Deborah Jennings-Booze 757-717-1960
Washington Lacey Calvert 360-977-9666
Washington, DC Ann-Marie Kinzler 703-335-0911
West Virginia Abigail Justice 304-741-9396
Wisconsin Patricia Mevis 920-819-2508
Wyoming Myrna Johnson 307-214-4979
Adult Children Judy and Clifford Fry
Males with Rett Kate Ferdinandsen
Males with Rett Ashley Cotham 210-414-2430
Bilingual (Spanish/Eng) Beatriz Bueno 224-413-9027
Bilingual (Spanish/Eng) Sarah Clapp  513.454.0030
Grandparents Leslie Mayorga 770-312-5686
Dads Danny Warner 949-521-2665

Facebook Networks

Social media is a great tool to connect with other Rett syndrome families. These networks are Facebook groups that cater to the unique needs of a variety of individuals who love and care for someone with Rett syndrome.

Single Parents

Find support and understanding to overcome the challenges of being a single parent of a child with Rett syndrome.


This network is for fathers who are striving to better understand Rett syndrome as they cope with the diagnosis and what the future holds for their child.


This network provides resources and support for grandparents of children with Rett syndrome to help them better support their children and grandchildren.


This network provides support and resources for those who are a sibling of a child with Rett syndrome.


RettNet is a secure forum for the free exchange of information on various aspects of Rett syndrome awareness, care, research, treatment and support. This forum is a support community for registered members.

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