Oklahoma

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, Rettsyndrome.org
sbrant@rettsyndrome.org  1-913-221-8157

Family Empowerment Representative

Renee Farris, volunteer Family Empowerment Representative, Sparks, OK
renee.farris@ge.com 1-405-824-2458

Kristina Hackney, volunteer Family Empowerment Representative, Oklahoma City, OK
kristina@stylishjava.com    1-405-675-0748

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.

Visit DDS Area Offices Website

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.

View Department of Human Services Offices Website 

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

If you have favorite resources to share with others, please email that information and your experience to areed@rettsyndrome.org.

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

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

Accessible playgrounds in Oklahoma

View 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.

Rettsyndrome.org Oklahoma Facebook page

Rettsyndrome.org 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.