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
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.
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
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
Cleveland Clinic – 1-216-444-1994
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.
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.
State Agencies & Resources
Local Service Agencies
Ohio Department of Developmental Disabilities (DODD)
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.
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)
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.
Ohio Help Me Grow
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 Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to firstname.lastname@example.org.
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
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
ABC Pediatric Therapy Network
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)
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.
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.