Connect

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 Rettsyndrome.org.

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 david.luntz@hotmail.com 907-590-9140
Alabama Susan Lee slee4al@hotmail.com 205-910-2353
Arizona Catherine Galyon cate.galyon@expresspros.com 520-704-3787
Arkansas Jessica Williams jr.williams@hotmail.com 501-472-3248
California Jenny Mosca jennymosca@gmail.com 760-492-3989
California Danny Warner warnerd@valassis.com 949-521-2665
California Paige Nues pnues@rettsyndrome.org 510-499-3858
California Sherri Brady mom2LCM@gmail.com 562-619-0109
Connecticut Ariane McMahan arianemcmahan0218@gmail.com 203-520-5452
Florida Karli Hughes kghughes26@aol.com 863-899-0784
Florida Nikki Johnson nikkij02@att.net 850-686-5208
Georgia Jessica Kiefer Jessica.Kiefer1986@gmail.com 678-978-1115
Hawaii Vickie Kirihara vkirihara@gmail.com 808-383-5948
Idaho Shauna Murray shaunaemurray@gmail.com 208-890-5350
Illinois Shelby Sawyer Shelby.swann@yahoo.com 815-823-3760
Indiana Regan Zwald rzwald@gmail.com 317-607-9589
Iowa Charley Weaver cweaver@iowaheart.com 641-919-9100
Iowa Crystal Weaver crystal.weaver@van-burencsd.org 641-936-7257
Kansas Shannon Stoiber-Darrah kcrettmom@yahoo.com 913-302-7498
Kentucky Anetha Sanford cheleish@gmail.com 859-552-2122
Louisiana Pam Brady p.wandrei@icloud.com 985-212-5600
Maryland Elizabeth Calabrese Betrout4@gmail.com 410-474-2664
Maine Danielle McAllister stilljammin111@yahoo.com 207-743-9698
Maine Evie Swan evielynn6@gmail.com 775-200-8788
Michigan Lisa Rushin siecam@aol.com 989-285-5994
Minnesota Matt Dahms dahmsma@gmail.com 763-222-4995
Minnesota Ashley Dahms Ashley.dahms@gmail.com 763-607-9963
Minnesota Connie Lindberg ccl41@aol.com 612-247-3210
Missouri Joyce Opinsky jopinsky@gmail.com 314-346-1323
Missouri Amanda Sommer sommer.als@gmail.com 636-795-8195
Mississippi Misty Newman mistyland78@gmail.com 601-754-4096
North Carolina Kristin Barton Stephenson kristinbarton2@aol.com 919-453-4658
North Carolina Gwen Noecker comerga@yahoo.com 919-426-5554
North Carolina Caitlin Barbier caitlin.barbier@gmail.com 910-638-8803
Nebraska David and Terri Larson terri@plumstreet.com 562-619-0109
New Hampshire Michelle Boom gmboom@gmail.com 207-514-4044
New Jersey Leslie Greenfield leslieg417@gmail.com 732-462-8476
New Mexico Alicia Cortez arcortez@hotmail.com 505-429-2221
Nevada Brenda Turley breart@sbcglobal.net 775-830-3556
New York Shirley Hurlburt cnyrettrep@gmail.com 315-447-5200
Ohio Jennifer Martin jelizva@gmail.com 312-882-4402
Oklahoma Renee Farris renee.farris@ge.com 405-824-2458
Oklahoma Kristina Hackney Kristina@stylishjava.com 405-675-0748
Pennsylvania Maureen Charamella Maureen.charamella@yahoo.com 610-766-2930
South Carolina Hollis Gunn hollisgunn@msn.com 843-847-1248
South Carolina Tonya Hanna mommiefrog2001@yahoo.com 864-848-1323
South Dakota Nicole Bacan nbacan@icloud.com 605-670-9831
Tennessee Jaimie Patrick jcwall22@gmail.com 515-297-4755
Texas Vanessa Peace vanessa.ella.peace@gmail.com 972-977-5021
Texas Denay Hooks denayhooks@outlook.com 325-650-2408
Utah Anna Dance annad@mwciutah.com 801-897-1400
Vermont Shelley Waterman maw2h@yahoo.com 802-343-6775
Virginia Ann-Marie Kinzler amkinzler@hotmail.com 703-335-0911
Virginia Deborah Jennings-Booze angeldove1075@gmail.com 757-717-1960
Washington, DC Ann-Marie Kinzler amkinzler@hotmail.com 703-335-0911
West Virginia Abigail Justice abigailjustice.1986@gmail.com 304-741-9396
Wisconsin Patricia Mevis pattymevis94@gmail.com 920-819-2508
Wyoming Myrna Johnson timandmyrna@gmail.com 307-214-4979
Adult Children Judy and Clifford Fry jcfry@suddenlink.net
Bilingual (Spanish/Eng) Beatriz Bueno Beatrizbueno90@yahoo.com 224-413-9027
Bilingual (Spanish/Eng) Sarah Clapp sclapp@rettsyndrome.org  513.454.0030
Grandparents Leslie Mayorga leslieveg@gmail.com 770-312-5686
Dads Danny Warner warnerd@valassis.com 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.

Dads

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.

Grandparents

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

Siblings

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

RettNet

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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