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
[email protected] 1-913-221-8157
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.
State Agencies & Resources
Local Service Agencies
Agency for Persons with Disabilities (APD)
APD works with local communities and private providers to assist people who have developmental disabilities and their families. APD also provides assistance in identifying helpful supports and services.
Family Care Council Florida (FCCF)
The purpose of the FCCF is to advocate, educate, and empower individuals with developmental disabilities and their families. They partner with the Agency for Persons with Disabilities (APD) to bring quality services to individuals.
Act4Me provides funding to children with neurological disabilities and disorders (including Rett Syndrome) for speech, occupational, and physical therapy. Their target population are families that are uninsured or families with private insurance but insufficient coverage. They also provide grants for undocumented families who do not receive Medicaid or other government support. They also accept grant applications for Home Therapy Supplies such as, (but not limited to) wheelchairs, walkers, hearing, and speaking equipment.
iBudget is the Medicaid Waiver program for persons with developmental disabilities. It is how the Agency for Persons with Disabilities manages the Medicaid waiver system. It gives APD customers more control and flexibility to choose services that are important to them, while helping the agency to stay within its Medicaid waiver appropriation. Online application available. Email [email protected]
Consumer Directed Care Plus (CDC+)
Transition to Adult Services
Family Network on Disabilities
This group created the Transition Tool Kit. In it, you will find information related to transitioning from high school life to adulthood, including articles, videos and web links.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Dr. Donald George
Dr. George is Division Chief ofthe Pediatric Gastroenterology Clinic at Nemours Childrens Specialty Care in Jacksonville.
Dr. Frank Sierra
Dr Sierra is a Pediatric Dentist in Tampa.
All Children's Hospital
Child Neurology Center of NW Florida
Dr. Richard Reynolds
Dr. Reynolds is an Orthopedic specialist at Nemours in Pensacola.
Dr. Ronald G Davis
Dr. Davis leads the Pediatric Epilepsy Center of Central Florida in Orlando.
Jordan Stewart, M.A., CCC-SLP
Jennifer Ferreira & Daniel Dardiz
Both are certified CCC-SLP at All Children’s Hospital
Legal Resources & Information
Florida Disabled Outdoors Association (FDOA)
Special Needs Resource Project (SNRP)
SNRP provides a basic guide for parents of children with chronic health issues, disabilities and special needs. This site is designed to help you get a jump-start in your search for helpful information and resources. Every situation is unique. Their aim is to help you learn the basic skills you’ll need to obtain the specific resource information, equipment, and services your child needs. Though focused on children ages 0-22, most of the information offered is applicable to adults as well.
Children's Medical Services (CMS)
Camp Boggy Creek
Camp Boggy Creek is a member of SeriousFun Children’s Network. Founded by Paul Newman, SeriousFun is a global community of independently managed and financed camps and programs creating opportunities for children with serious illnesses and their families to reach beyond illness and discover joy, confidence and a new world of possibilities, always free of charge.
Deliver the Dream
Deliver the Dream helps families experiencing a serious illness by organizing monthly three-day, two-night retreats. Each family that attends has a family member – whether it’s a child or parent – living with an illness such as cancer, autism, a blood disorder, spina bifida or multiple sclerosis. The program invites up to 15 families, free of charge, to one of our retreat locations so they can relax, enjoy time together, forge new friendships and create support groups with the other families dealing with the same illness.
Center for Autism & Related Disabilities (CARD)
CARD located at USF is a community-based project that provides information and consultation to individuals diagnosed with autism spectrum disorders and related disabilities. CARD-USF offers instruction and coaching to families and professionals.
Buddy Break was created to provide respite care for families with little or no support system to give them a break when they need it the most. Buddy Break gives parents that break, while allowing people to get involved by being a Buddy friend to a child.
Purple Ribbon Mobility
Purple Ribbon Mobility offers brand new wheelchair conversions on gently used Dodge Grand Caravan or Toyota Sienna mini-vans. They can convert your Dodge Grand Caravan or Toyota Sienna to be Wheelchair Accessible at a cost that is thousands less and with fewer restrictions on age and mileage of the van than traditional conversions. Located in Georgia, providing services throughout the southeast.