Ohio Resources

Family Empowerment Representatives | Treatment and Research Centers | OH State Agencies | Parent Recommendations

 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.

Samantha Brant - Family & Community Engagement Manager, Rettsyndrome.org  sbrant@rettsyndrome.org  https://www.rettsyndrome.org/image/icons/icon-phone.png1-913-221-8157

Jennifer Martin, volunteer Family Empowerment Representative, Dublin OH  jvaughan36@yahoo.com  1-312-882-4402

Treatment and Research Centers


Rett Syndrome Clinic at Cincinnati Children's Hospital


The clinic has a core team that includes a pediatric neurologist, behavioral/developmental medicine physician, nutritionist, social worker, occupational therapist and speech-language pathologist. All see the patient during the initial evaluation, then the team develops an individualized care plan. 

Clinical Trials

Please contact the trial site for current enrollment status.

 Natural History Study

Rett Syndrome Clinic at Cincinnati Children's Hospital


The clinic has a core team that includes a pediatric neurologist, behavioral/developmental medicine physician, nutritionist, social worker, occupational therapist and speech-language pathologist. All see the patient during the initial evaluation, then the team develops an individualized care plan. Contact Caroline Spencer at  Caroline.spencer@cchmc.org 

 Cleveland Clinic


The Principal Investigator for this study is Dr. Sumit Parikh  parikhs@ccf.org.  For more information on the study, please contact Irys Caristo CARISTI@ccf.org or call.

 -Travel Assistance for NHS Sites


Marriott is working on establishing discounts for hotels near our clinical trial sites.  For more information, contact Ashley Lucchese, Marriott Sales Executive Ashley.Lucchese@Marriott.com 

Nearby hotels include: Kingsgate Marriott Conference Center at the University of Cincinnati, Courtyard Cincinnati Midtown/Rookwood


 State Agencies - Ohio

Local Service Agencies

Ohio Department of Developmental Disabilities (DODD)


DODD has county offices to help you find services, providers and resources. Contact your local department to get qualified for services.

Bureau for Children with Medical Handicaps Program (BCHM)


BCHM is part of the Ohio Dept of Health and provides assistance to children with special health care needs and their families who meet the medical and financial eligibility criteria. Must be under age 21.

The Dream Factory of Southeast Ohio

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. 

Handicap Placard

Ohio BMV


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.

State Medicaid 

Medicaid State Plan


 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)


ODJFS offers Ohio's Medicaid program.

Ohio Home Care Waiver Program


This waiver is the Medicaid program of home care services and is administered by ODJFS.

Division of Disability Determination (DDD)

 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


Help Me Grow is an early childhood initiative, birth through age 2, that provides serices for children with developmental delay or disabilities.  Email HMG@odh.ohio.gov

Office of Early Learning and School Readiness


This office oversees services for children in the early intervention and preschool settings.


Office for Exceptional Children


This office oversees school districts and educational programs to improve results for students with disabilities


Conservatorship is a legal proceeding in which an individual or agency (to be known as the "conservator") is appointed by a court to be responsible for a person who needs assistance in daily living. Check with your child's high school or your county Superior Court Probate Office for information on Self Help Clinics. This process should start 6 months before the 18th birthday.

Ohio Legal Services


Ohio Legal Services provides information conservatorship and legal assistance.

Transition to Adult Services

Disability Rights Ohio

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


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.

Parent Recommendations

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

 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-Directorof 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


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


This site has a comprehensive listing of clinical studies involving Rett Syndrome patients or families.

Therapy ( PT, OT, Speech, Hippotherapy and Aquatherapy)

Triangle Therapy Service, LLC


Triangle Therapy is located in Eaton and offers PT, OT, Speech, Hippotherapy and summer day camps.
Email: info@triangletherapyservices.com

ABC Pediatric Therapy Network


ABC Pediatric Therapy Network provides a variety of care in multiple locations across Ohio.
Email: kwood@abcpediatrictherapy.com

Here's Hope Horse Farm


Here's Hope is in Cuyahoga Falls.

Fieldstone Farm Therapeutic Riding Center, Chagrin Falls


Legal Resources

Ohio Legal Services


This organization provides a variety of assisted legal help. 

Disability Rights Ohio

Disability Rights has a listing of both state and national legal advocacy groups.


Society for Accessable Travel and Hospitality (SATH)


SATH has tips and planning for travelers with disabilities.  Email sathinfo@sath.org

Adaptive Sports of Ohio


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

The center's website has a vast database of nationwide resources covering an  array of topics. Email: malizo@spannj.org

More Parent Recommendations

 Kaitlyn's Cottage, Respite Care


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

Achievement Centers lists summer camps and activities.


Milestones lists summer camps and activities


 Cap4Kids lists summer camps and activities

ARC of Ohio

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

Family Handbook for Families of Children With Special Health Care Needs In Ohio

 This handbook contains a vast amount of vital information for Ohio parents.

The Center for Parent Information and Resources

This site has a large database of nationwide resources covering a variety of relevant topics.

Ohio Rettsyndrome.org Families

This Facebook group is private, ask to join.


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