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 International Rett Syndrome Foundation.

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

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The International Rett Syndrome Foundation (IRSF) is looking for a passionate storyteller and marketer to advance our mission of accelerating research and empowering families affected by Rett syndrome.

 

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