Florida

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

Nikki Johnson, volunteer Family Empowerment Representative, Milton
nikkij02@att.net 1-850-686-5208

Karli Hughes, volunteer Family Empowerment Representative, Lakeland
kghughes26@aol.com 1-863-899-0784

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.

State Agencies & Resources

Local Service Agencies

Agency for Persons with Disabilities (APD)

Visit Agency for Persons with Disabilities (APD) Website
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)

Visit Family Care Council Florida (FCCF) Website
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

Visit Act4Me Website
1-786-457-2993
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.

State Medicaid

iBudget Florida

Visit iBudget Florida Website
1-866-APD-CARES
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 APD.iBudget.Contacts@apdcares.org

Consumer Directed Care Plus (CDC+)

Visit Consumer Directed Care Plus (CDC+) Website
1-866-761-7043
CDC+is an alternative to iBudget which gives the consumer the opportunity to hire workers and vendors directly. Paid workers may even be family members or friends.

Florida Medicaid Waivers

Visit Florida Medicaid Waivers Website
Florida currently has four HCBS 1915(c) waiversthat are open to children. Three of these waive parental income; we do not know the status of the fourth. KidsWaivers.org has an overview of the programs.

Early Intervention

Early Steps

Visit Early Steps Website
1-850-245-4200
Early Steps is Florida’s early intervention system that offers services to eligible infants and toddlers (birth to 36months) with significant delays or a condition likely to result in a developmental delay.  Email CMS.EarlyStepsPublicComment@flhealth.gov or call Kelly Rogers for more information

Education

Bureau of Exceptional Education and Student Services

Visit Bureau of Exceptional Education and Student Services Website
This department administers programs for students with disabilities.

Conservatorship

Florida Courts

Visit Florida Courts Website
Florida courts provide information on guardianship/conservatorship.

PowerofAttorney.com

Visit PowerofAttorney.com
PowerofAttorney.com offers online resources, forms and assistance.

Transition to Adult Services

Family Network on Disabilities

Visit Family Network on Disabilities Website
1-800- 825-5736
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.
fnd@fndusa.org

Vocational Rehabilitation

Visit Vocational Rehabilitation Website
VR is a federal-state program that helps people who have physical or mental disabilities get or keep a job.

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

Medical Professionals

Dr. Donald George

1-904- 697-3600
Dr. George is Division Chief ofthe Pediatric Gastroenterology Clinic at Nemours Childrens Specialty Care in Jacksonville.

Dr. Frank Sierra

1-813-889-0780
Dr Sierra is a Pediatric Dentist in Tampa.

All Children's Hospital

Visit All Children’s Hospital Website
1-800-456-4543
Dr. Cassandante, Neurologist and Dr Hahn, Orthopaedist and Jennifer Ferreira , Speech Pathology

Child Neurology Center of NW Florida

Visit Child Neurology Center of NW Florida Website
Dr. James Ben Renfroe
1-850-932-5055
Dr. Renfroe is a Pediatric Neurologist at the Child Neurology Center in Pensacola.

Dr. Richard Reynolds

1-859-505-4720
Dr. Reynolds is an Orthopedic specialist at Nemours in Pensacola.

Dr. Ronald G Davis

1-407-293-1122
Dr. Davis leads the Pediatric Epilepsy Center of Central Florida in Orlando.

Therapy

Jennifer Ferreira & Daniel Dardiz

1-321-438-7226
Both are certified CCC-SLP at All Children’s Hospital

Pediatric Therapy Center of NWFL

Visit Pediatric Therapy Center of NWFL Website
Pediatric Therapy Center of NWFL  provides of occupational, physical and speech therapy to children from birth to twenty one years of age.

Legal Resources & Information

Disability Rights Florida

Visit Disability Rights Florida Website
Disability Rights Florida assists any Floridians with disability-related issues, including legal services.

Recreation

Florida Disabled Outdoors Association (FDOA)

Visit Florida Disabled Outdoors Association (FDOA) Website
The FDOA is a non-profit organization working to enrich lives through accessible inclusive recreation.

Visit Florida

Visit Florida Website
Visit Florida lists events, activities and resources for those with special needs.

Additional Resources

Special Needs Resource Project (SNRP)

Visit Special Needs Resource Project (SNRP) Website
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)

Visit Children’s Medical Services (CMS) Website
CMS is a collection of programs for eligible children with special needs. The programs and services are family-centered and designed to help children with a variety of conditions and needs.

Camp Boggy Creek

Visit Camp Boggy Creek Website
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

Visit Deliver the Dream Website
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)

Visit Center for Autism & Related Disabilities (CARD) Website
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.  1-813-974-2532

Buddy Break

Visit Buddy Break Website
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.

Special Olympics 

1-863-815-6671

Purple Ribbon Mobility

Visit Purple Ribbon Mobility Website
1-678-572-4410
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.
purpleribbonmobility@gmail.com