Ohio

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

Jennifer Martin, volunteer Family Empowerment Representative, Dublin OH
jelizva@gmail.com  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

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

Natural History Study

Visit Rett Syndrome Clinic at Cincinnati Children’s Hospital Website
1-513-803-7935
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 – 1-216-444-1994  

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 – 1-781-333-1593

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.

Clinics

Rett Syndrome Clinic at Cincinnati Children's Hospital

Visit Rett Syndrome Clinic at Cincinnati Children’s Hospital Website
1-513-636-4222
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.

State Agencies & Resources

Local Service Agencies

Ohio Department of Developmental Disabilities (DODD)

Visit Ohio Department of Developmental Disabilities (DODD) Website
1-800-617-6733
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
1-800-324-8680
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
1-614-466-2100
ODJFS offers Ohio’s Medicaid program.

Ohio Home Care Waiver Program

Visit Ohio Home Care Waiver Program Website
1-800-324-8680
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
1-800-755-4769
Help Me Grow is an early childhood initiative, birth through age 2, that provides services for children with developmental delay or disabilities.  Email HMG@odh.ohio.gov.

Office of Early Learning and School Readiness

Visit Office of Early Learning and School Readiness Website
1-877-644-6338
This office oversees services for children in the early intervention and preschool settings.

Education

Office for Exceptional Children

Visit Office for Exceptional Children Website
1-877-644-6338
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
1-877-644-6338
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
1-614-752-7800
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 areed@rettsyndrome.org.

Medical Professionals

Dr. Shannon M. Standridge

1-513-636-4222
Dr. Shannon M. Standridge is co-Director of the Rett Syndrome Clinic at Cincinnati Children’s Hospital.

Dr. Patricia M. Manning-Courtney 

1-513-636-5340
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

1-513-636-0071
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
1-216-844-3722
Dr. David Katz, PhD is a professor in the Department of Neurosciences at University Hospitals of Cleveland and is actively involved in research.

Therapy

Triangle Therapy Service, LLC

Visit Triangle Therapy Service, LLC Website
1-937-456-6505
Triangle Therapy is located in Eaton and offers PT, OT, Speech, Hippotherapy and summer day camps.
Email: info@triangletherapyservices.com

ABC Pediatric Therapy Network

Visit ABC Pediatric Therapy Network Website
1-937-427-9200
ABC Pediatric Therapy Network provides a variety of care in multiple locations across Ohio.
Email: kwood@abcpediatrictherapy.com

Here's Hope Horse Farm

1-330-929-7694
Here’s Hope is in Cuyahoga Falls.

Fieldstone Farm Therapeutic Riding Center, Chagrin Falls

1-440-708-0013

Recreation

Society for Accessible Travel and Hospitality (SATH)

Visit Society for Accessible Travel and Hospitality (SATH) Website
1-212-447-7284
SATH has tips and planning for travelers with disabilities.  Email sathinfo@sath.org

Adaptive Sports of Ohio

Visit Adaptive Sports of Ohio Website
1-330-262-1200
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: malizo@spannj.org

Additional Resources

Kaitlyn's Cottage, Respite Care

Visit Kaitlyn’s Cottage, Respite Care Website
1-419-783-4411
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.

Milestones

Visit Milestones Website
Milestones lists summer camps and activities.

Cap4Kids

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 Rettsyndrome.org Families

Click to join.

GOBABYGO at CSU

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.