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

Jennifer Martin, volunteer Family Empowerment Representative, Dublin OH
[email protected]  1-312-882-4402

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

Nationwide Children’s Hospital

Clinic Name: Rett Syndrome Clinic
Medical Director: Christopher Beatty, MD
Clinic Address: 700 Children’s Dr., Columbus, OH 43205
Clinic Phone: (614) 722-4625
Part of the IRSF Center of Excellence Network

Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.


Cincinnati Children’s Hospital Medical Center

Clinic Name: Vinaya Rett Syndrome and Related Spectrum Disorders Clinic
Medical Director: Shannon Standridge, DO, MPH
Clinic Address: 3333 Burnet Avenue, Cincinnati, OH 45229
Clinic Phone: (513) 636-4222
Part of the IRSF Center of Excellence Network

State Agencies & Resources

Local Service Agencies

Ohio Department of Developmental Disabilities (DODD)

Visit Ohio Department of Developmental Disabilities (DODD) Website
DODD has county offices to help you find services, providers and resources. Contact your local department to get qualified for services.

The Dream Factory of Southeast Ohio

Visit The Dream Factory of Southeast Ohio Website
The Dream Factory is the largest children’s wish-granting organization that does not limit its mission to children who have life-threatening illness. The organization believes children with chronic illnesses and disorders also suffer from substantial emotional and physical pain.

State Medicaid

Medicaid State Plan

Visit Ohio’s Medical State Plan Website
The Medicaid State Plan administers services that are provided to Medicaid consumers including home health nursing, home health aide and skilled therapies (PT, OT, Speech Pathology). Medical necessity must be certified by the treating physician.

Ohio Department of Job & Family Services (ODJFS)

Visit Ohio Department of Job & Family Services (ODJFS) Website
ODJFS offers Ohio’s Medicaid program.

Ohio Home Care Waiver Program

Visit Ohio Home Care Waiver Program Website
This waiver is the Medicaid program of home care services and is administered by ODJFS.

Division of Disability Determination (DDD)

Visit Division of Disability Determination (DDD) Website
1-800-282-4536 x 1438
The DDD determines medical eligibility for Ohioans in relation to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs.

Early Intervention

Ohio Help Me Grow

Visit Ohio Help Me Grow Website
Help Me Grow is an early childhood initiative, birth through age 2, that provides services for children with developmental delay or disabilities.  Email [email protected].

Office of Early Learning and School Readiness

Visit Office of Early Learning and School Readiness Website
This office oversees services for children in the early intervention and preschool settings.


Office for Exceptional Children

Visit Office for Exceptional Children Website
This office oversees school districts and educational programs to improve results for students with disabilities.

Transition to Adult Services

Disability Rights Ohio

Visit Disability Rights Ohio Website
IDEA mandates transition services planning for students with disabilities who are 16 years of age. In Ohio, schools must begin transition planning when the student turns 14. The transition plan is specifically stated in the child’s Individualized Education Program (IEP).  Disability Rights Ohio has excellent transition resources.

Ohio Department of Education

Visit Ohio Department of Education Website
For a student with a disability who is graduating or exceeding the age requirement for free appropriate public education (FAPE), a summary of the student’s academic achievement and functional performance is required and provides recommendations on how to assist students in meeting their postsecondary goals.

Handicap Placard

Ohio BMV

Visit Ohio BMV Website
The BMV issues Disabled Person Placards. Obtain a doctor’s signature on the application for Disabled Person Placard, which is available online. Apply by mail or in person.  For Disabled plates a medical certification is required with the application.

If you have favorite resources to share with others, please email that information and your experience to [email protected].

Medical Professionals

Dr. Shannon M. Standridge

Dr. Shannon M. Standridge is co-Director of the Rett Syndrome Clinic at Cincinnati Children’s Hospital.

Dr. Patricia M. Manning-Courtney 

Dr. Patricia M. Manning-Courtney is co-Director of the Division of Developmental and Behavioral Pediatrics at Cincinnati Children’s Hospital.

Jodi Cristopfel, MSW, LISW-S

Jodi is a social worker in the Division of Social Services at Cincinnati Children’s Hospital.

Dr. David Katz, PhD

Read more about Dr. David Katz, PhD
Dr. David Katz, PhD is a professor in the Department of Neurosciences at University Hospitals of Cleveland and is actively involved in research.


Triangle Therapy Service, LLC

Visit Triangle Therapy Service, LLC Website
Triangle Therapy is located in Eaton and offers PT, OT, Speech, Hippotherapy and summer day camps.
Email: [email protected]

ABC Pediatric Therapy Network

Visit ABC Pediatric Therapy Network Website
ABC Pediatric Therapy Network provides a variety of care in multiple locations across Ohio.
Email: [email protected]

Here's Hope Horse Farm

Here’s Hope is in Cuyahoga Falls.

Fieldstone Farm Therapeutic Riding Center, Chagrin Falls



Society for Accessible Travel and Hospitality (SATH)

Visit Society for Accessible Travel and Hospitality (SATH) Website
SATH has tips and planning for travelers with disabilities.  Email [email protected]

Adaptive Sports of Ohio

Visit Adaptive Sports of Ohio Website
Located in Wooster, Ohio, this organization was established to promote the health and wellness of individuals with physical disabilities by providing competitive and recreational adaptive sport opportunities.

The Center for Parent Information and Resources

Visit The Center for Parent Information and Resources Website
The center’s website has a vast database of nationwide resources covering an array of topics. Email: [email protected]

Additional Resources

Kaitlyn's Cottage, Respite Care

Visit Kaitlyn’s Cottage, Respite Care Website
Kaitlyn’s Cottage is a country cottage getaway designed for individuals with intellectual and physical disabilities and their families. Get secure, nurturing short-term care for your loved one. Individuals of all ages needing respite care are welcome. Located in Defiance, Ohio.

Achievement Centers

Visit Achievement Centers Website
Achievement Centers lists summer camps and activities.


Visit Milestones Website
Milestones lists summer camps and activities.


Visit Cap4Kids Website
Cap4Kids lists summer camps and activities.

ARC of Ohio

Visit ARC of Ohio Website
The ARC offers a variety of helpful services, including trainings, for families of children and adults with disabilities.

The Center for Parent Information and Resources

Visit The Center for Parent Information and Resources Website
This site has a large database of nationwide resources covering a variety of relevant topics.

Ohio IRSF Families

Click to join.


Visit GOBABYGO at CSU Website
Cleveland State was recently named the study site and a major hub for GoBabyGo, a national movement to promote mobility across the lifespan.