Oklahoma
- Family Empowerment Representatives
- Treatment and Research Centers
- State Agencies & Resources
- Parent Recommended Resources
Family Empowerment Representatives
Family Empowerment Representatives are volunteers who provide emotional support, information and resources to families affected by Rett syndrome. Contacting them should be your first step.
National Family Empowerment Representative
Samantha Brant – Family & Community Engagement Manager, International Rett Syndrome Foundation
[email protected] 1-913-221-8157
Family Empowerment Representative
Renee Farris, volunteer Family Empowerment Representative, Sparks, OK
[email protected] 1-405-824-2458
Treatment and Research Centers
Your child may be able to participate in studies and trials to advance treatment and knowledge of Rett syndrome. There are clinics specializing in Rett syndrome that can help you provide Rett-specific care for your child.
Clinical Trials
Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.
State Agencies & Resources
Local Service Agencies
Developmental Disabilities Services Division
Visit Developmental Disabilities Services Division Website
1-405-521-6267
Developmental Disabilities Services Division offers a wide array of community services for individuals with developmental disabilities and their families. Services are individualized to meet each person’s needs. To apply for services, contact your area DDS office.
State Medicaid
TEFRA Children Waiver
View TEFRA Children Waiver Website
TEFRA Children Waiver provides services to children who would otherwise require care in an institution with any type of disability. You can apply at any Oklahoma Department of Human Services office. This program waives parent income. Call ahead to see if you need an appointment.
Community Waiver
View Community Waiver Website
1-800-522-1075 Enid/Oklahoma City 1-800-522-1086 Tulsa 1- 800-522-1086 Pauls Valley
This DDSD waiver serves children over the age of 3 with a developmental disability. Parent income does not waive parent income. To apply call the area in which you live.
Early Intervention
Sooner Start
Visit Sooner Start Website
Sooner Start Early Intervention Program is designed to meet the needs of children with developmental delay or disability from birth to age 3. For more information, call the Joint Oklahoma Information Network at 211 or contact the nearest regional office listed.
Conservatorship
Legal Aid Services of Oklahoma
Visit Legal Aid Services of Oklahoma Website
Legal Aid Services of Oklahoma can help with the guardianship process.
Transition to Adult Services
Oklahoma Parents Center (OPC)
Visit Oklahoma Parents Center (OPC) Website
OPC can help families with the transition process.
Handicap Placard
Department of Public Safety (DPS)
View Department of Public Safety (DPS) Website
DMV Handicap placards are issued by the Department of Public Safety (DPS). To apply, complete the Physical Disability Parking Placard Application and return by mail to: Department of Public Safety, Driver Compliance Division – Physical Disability, P.O. Box 11415, Oklahoma City, OK 73136. This takes about 20 business days to process and you will receive the handicap placard in the mail.
View or Download the Physical Disability Parking Placard Application
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Medical Professionals
Amber Stocco, MD Pediatric Neurology, Oklahoma City
1-405-713-7060
Read more about Amber Stocco, MD
John Grunrow, MD Gastroenterology, Oklahoma City
1-405-271-6549
Read more about John Grunrow, MD
Joseph Davey, MD Orthopedic Surgery, Oklahoma City
1-405-271-2669
Read more about Joseph Davey, MD
Brian Malloy, DDS Oklahoma City
1-405-692-1222
Read more about Brian Malloy, DDS
Therapy
JD McCarty Center (PT, OT, Aquatic Therapy), Norman OK
Visit JD McCarty Center Website
1-405-307-2800
The Children’s Center Rehabilitation Hospital
Visit the Children’s Center Rehabilitation Hospital Website
6800 NW 39th Expy, Bethany, OK 73008
405-789-6711
Legal Resources & Information
Oklahoma Disability Law Center (ODLC)
Visit Oklahoma Disability Law Center (ODLC) Website
1-405-525-7755 Oklahoma City 1-918-743-6220 Tulsa
ODLC protects, promotes and expands the rights of people with disabilities.
Recreation
Frontier City
Accessible playgrounds in Oklahoma
Additional Resources
Rocky Mountain Rett Association (RMRA)
Visit Rocky Mountain Rett Association (RMRA) Website
Rocky Mountain Rett Association (RMRA) is a member-based organization serving the Rocky Mountain region dedicated to improving the quality of life for girls and their families impacted by Rett Syndrome. We achieve this by providing supportive services and resources to girls and their families, engaging in advocacy, education and awareness efforts, and raising funds to support the search for a cure and improved treatment options.
Oklahoma IRSF Facebook page
International Rett Syndrome Foundation Oklahoma Facebook page is private – click and ask to join!
Oklahoma ABLE Tech
Visit Oklahoma ABLE Tech Website
1-405-744-9748
Oklahoma ABLE Tech is a statewide Assistive Technology Program located at Oklahoma State University. They can assist with devices on loan, demonstrations, exchanges, and device funding.