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 |
|---|---|---|---|
| Alabama | Susan Lee | [email protected] | 205-910-2353 |
| 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 | TBD | ||
| 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] | 641-919-7257 |
| 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 | TBD | ||
| 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 |
| Oregon | Joey Razzano | [email protected] | 1-503-998-5096 |
| 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] | 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.