Florida

Suggest a Resource

 

Achondroplasia
Contact: Chris O’Neill

Angelman syndrome
Florida Alliance for Assistive Service and Technology

3333 W Pensacola Street Building 100
Suite 140
Tallahassee, FL, 32304
Phone: (888) 788-9216, (850) 487-3278
TTY: (850) 922-5951
Epilepsy Services Program
109 North Kirkman Road
Orlando, FL 32811
407) 422-1416
Florida Association of Speech-Language Pathologists and Audiologists (FLASHA)
222 S. Westmonte Drive #101
Altamonte Springs, FL, 32714
Phone: (800) 243-3574, (407) 774-7880
Autism
Autism Spectrum Kids United Support Florida, Inc.
4100 N.Wickham Rd. Unit 107A

Melbourne, FL 32935

Phone: (321) 802-1275
Contact: Arwyn Holmes

Center for Autism Resources and Education

6215 Lorraine Road

Lakewood Ranch, FL 34202

Phone: (941) 758-4529
Contact: Dr. Kirstina Ordetx

Central Florida Autism Institute

P.O. Box 2237

Lakeland, FL 33806

Phone: (863) 680-1396
Contact: Terry Millican
Autism Society of Florida

PO Box 970646

Coconut Creek, FL 33097

Phone: (954) 349-2820

Website: http://www.autismfl.com

FAU Center for Autism and Related Disabilites

777 Glades Rd.

Boca Raton, FL 33431

Phone: (561) 297-2023
Support Groups:
Autism Caregivers Connect
3933 Oak Hill Drive

Cocoa, FL 32926

Patty Blanton
Contact Email:
Support For The Autism Spectrum Group Inc.
Boca Raton, FL 33431

Phone: (954) 290-4612
Contact: Dr Eric Nach
Spectrum Support Group
Fort Myers, FL 33192

Outreach Autism Services Network, Inc.

2801 SW College Rd. #12

Ocala, FL 34474

352 462 0168
Contact: Lori Silloway

Blind
Educational Services:

Florida Department of Education: Bureau of Exceptional Education and Student Services
325 West Gaines Street
Suite 614
Tallahassee, FL 32399-0400
Phone: (850) 245-0475
Fax: (850) 245-0953
TDD/TTY: (850) 245-0475
School for the Blind
Florida School for the Deaf and the Blind
207 North San Marco Avenue
St. Augustine, FL 32084
Phone: (904) 827-2200
Toll-Free: (800) 344-3732
Rehabilitation Services:
Florida Department of Education: Division of Blind Services
325 W. Gaines Street
Suite 1114
Tallahassee, FL 32399
Phone: (850) 245-0331
Fax: (850) 245-0363
Toll-Free: (800) 342-1828
NLS Library:
Broward County Talking Book Library
100 South Andrews Avenue
Ft. Lauderdale, FL 33301
Phone: (954) 357-7555
Fax: (954) 357-7420
TDD/TTY: (954) 357-7528
Florida Bureau of Braille and Talking Book Library Services
421 Platt Street
Daytona Beach, FL 32114-2804
Phone: (386) 239-6000
Fax: (386) 239-6069
Toll-Free: (800) 226-6075
Hillsborough County Talking Book Library
3804 South Manhattan Avenue
Tampa, FL 33611-1214
Phone: (813) 272-6024
Fax: (813) 272-6072
TDD/TTY: (813) 272-6305
Lee County Talking Books Library, Lee County Library System
1651 Lee Street
Fort Myers, FL 33901
Phone: (239) 533-4780
Fax: (239) 485-1175
Orange County Library System, Talking Book Section
101 East Central Boulevard
Orlando, FL 32801
Phone: (407) 835-7464
Fax: (407) 834-7642
TDD/TTY: (407) 835-7641
Pinellas Talking Book Library
1330 Cleveland Street
Clearwater, FL 33755-5103
Phone: (727) 441-9958
Fax: (727) 441-9068
Talking Book Library of Dade and Monroe Counties, Miami-Dade Public Library System
2455 NW 183 Street
Miami, FL 33056-3641
Phone: (305) 751-8687
Fax: (305) 757-8401
Toll-Free: (800) 451-9544
TDD/TTY: (305) 474-7258
Talking Books Library, Brevard County Library System
308 Forrest Avenue
Cocoa, FL 32922-7781
Phone: (321) 633-1810
Fax: (321) 633-1838
TDD/TTY: (321) 633-1838
Talking Books, Palm Beach County Library Annex
4289 Cherry Road
West Palm Beach, FL 33409-9808
Phone: (561) 649-5486
Toll-Free: (888) 780-5151
Talking Books/Special Needs Library, Jacksonville Public Library
303 N. Laura Street
Jacksonville, FL 32202
Phone: (904) 630-1999
Fax: (904) 630-0604
TDD/TTY: (904) 630-2740
West Florida Regional Library, Subregional Talking Book Library
5740 N Ninth Avenue
Pensacola, FL 32504
Phone: (850) 471-6000
Fax: (850) 595-0132
TDD/TTY: (850) 435-1763
Other Agencies:
Center for the Visually Impaired
1187 Dunn Avenue
Daytona Beach, FL 32114
Phone: (386) 253-8879
Fax: (386) 253-9178
Toll-Free: (800) 227-1284
Central Florida Parent Center
1021 Delaware Avenue
Palm Harbor, FL 34683
Phone: (727) 789-2400
Fax: (724) 789-2454
Family Network on Disabilities of Florida
2196 Main Street
Dunedin, FL 34698
Phone: (727) 523-1130
Florida and Virgin Islands (FAVI) Deaf-Blind Collaborative
University of Florida
P.O. Box 100234
Gainesville, FL 32610
Phone: (352) 273-7530
Fax: (352) 273-8539
Toll-Free: (800) 667-4052
Florida Center for the Blind
7634 SW 60th Avenue
Ocala
Ocala, FL 34476
Phone: (352) 873-4700
Fax: (352) 873-4751
Florida Council of the Blind
9901 SW 138th Street
Miami, FL 33176
Phone: (305) 251-6983
Toll-Free: (800) 267-4448
Florida Early Steps
Children’s Medical Services
2585 Merchants Row Blvd
Tallahassee, FL 32399-1707
Phone: (850) 245-4456
Fax: (850) 922-5385
Toll-Free: (800) 218-0001

Cerebral Palsy
UCP of Central Florida

3305 S. Orange Avenue
Orlando, FL 32806
Phone: (407) 852-3300
Twitter: @UCPofCFL
Website: http://www.ucpcfl.org
UCP of Southwest Florida
 2203 30th Ave. W
Bradenton, FL 34205
Phone: (941) 251-4956
Website: http://ucpswfl.org
UCP of Tallahassee, Inc
1830 Buford Ct.
Tallahassee, FL 32308
UCP of Tampa Bay
2215 E Henry Ave.
Tampa, FL 33610
Phone: (813) 239-1179
Twitter: @UCPTampaBay
Website: http://ucptampa.org

Congenital Heart Defect

ACHD Clinic Mayo Clinic Jacksonville
Mayo Clinic, Jacksonville, Florida
Jacksonville, FL
Phone: (904) 953-7278
Medical Director: Naser Ammash, MD
Adult Congenital Cardiology Clinic at the University of Florida Jacksonville Pediatric Cardiovascular Center
Wolfson Children’s Hospital/Baptist Heart Hospital Jacksonville
Jacksonville, FL
Phone: (904) 633-4110
Medical Director: Brandon Kuebler, MD
Arnold Palmer Hospital for Children
Orlando Health Heart Institute
Orlando, FL
Phone: (407) 649-6907
Medical Director: David Nykanen, MD, FACC, FRCPC, FSCAI
Memorial Cardiac and Vascular Institute/ Joe DiMaggio Children’s Hospital Adult Congenital Heart Disease Center
Total Heart Center at Memorial Regional Hospital
Hollywood, FL
Phone: (954) 265-2243
Medical Director: Larry Latson, MD
Miami Adult Congenital Heart Program (MACH)
Jackson Main Campus
Miami, FL
Phone: (305) 585-6683
Medical Director: Satinder K. Sandhu, MD
Nicklaus Children’s Hospital, Adult Congenital Heart Disease Program (Miami Children’s Health System)
Nicklaus Children’s Hospital
Miami, FL
Phone: (305) 662-8301
Medical Director: John F. Rhodes, MD
Tampa Bay Adult Congenital Heart Clinic
St. Joseph’s Hospital
Land O’Lakes, FL
Phone: (727) 322-4830
Medical Director: Hector L. Fontanet, MD, FACC
University of Florida ACHD Program
UF Health
Gainesville, FL
Phone: (352) 273-7770

Medical Director: Arwa Saidi, MB, BCh, MEd

Cleft Lip and/or Pallete

University of Florida Craniofacial Clinic Team – CPT, CFT
1699 SW 16th Avenue
Bldg A
Gainesville, FL 32608-1158
Phone: (352) 627-9326
Fax: (352) 627-4564
Patient Age Range: 0-21
Team Leaders: Virginia L. Dixon-Wood, MA; Donald Fillipps, MD

Team Coordinator: Holly Shenk, RN, CPN

Joe DiMaggio Craniofacial Center – CPT, CFT
4651 Sheridan St Ste 150
Hollywood, FL 33021-3443
Phone: (9540 265-1472
Fax: (954) 983-6243
Patient Age Range: 0-99
Team Leaders: Margaret Grell, MD; Roman Yusupov, MD
Team Coordinator: Bobby J. Brasher, ARNP
Jacksonville Cleft & Craniofacial Program – CPT
820 Prudential Dr Ste 412
Jacksonville, FL 32207-8206
Phone: (904) 633-0935
Fax: (904) 633-0944
Patient Age Range: 0-18
Team Leader: Jeff Goldhagen, MD
Team Coordinator: Lida Sarnecky, RN
Website: http://hscj.ufl.edu/pediatrics/cleft
Holtz Children’s Hospital and University of Miami/Jackson Memorial Medical Center – CPT
1611 NW 12th Ave
Miami, FL 33136-1005
Phone: (305) 243-4500
Fax: (305) 243-4535
Patient Age Range: 0-21
Team Leader: Seth R. Thaller, MD, DMD

Team Coordinator: Jessica Loaiza

Nicklaus Children’s Hospital Craniofacial Center – CPT, CFT
3100 SW 62nd Ave
Miami, FL 33155-3009
Phone: (305) 662-8237
Fax: (305) 663-8518
Patient Age Range: 0-99
Team Leader: Mislen Bauer, MD
Team Coordinator: Anna R. Pelligra, ARNP
Email: anna.pelligra@mch.com
Website: http://www.nicklauschildrens.org
Johns Hopkins All Children’s Hospital Cleft and Craniofacial Center – CPT, CFT
Johns Hopkins All Children’s Hospital
601 5th St S Dept 70-7862
Saint Petersburg, FL 33701-4804
Phone: (727) 767-2930
Fax: (727) 767-8427
Patient Age Range: 0-21
Team Leader: Mary H. Pavan, MD, FAAP
Team Coordinator: Cathy Conley, BSN
Email: cconley6@jhmi.edu
 St Joseph’s Children’s Craniofacial Center – CPT, CFT
3003 W Dr Martin Luther King Jr Blvd Fl 2
Tampa, FL 33607-6307
Phone: (813) 870-4565
Fax: (813) 357-1798
Patient Age Range: 0-99
Team Leader: Pat Ricalde, DDS, MD

Team Coordinators: Andrea F. Godwin, MA; Jovanna Michelle Nogues, MS, CCC SLP

Tampa – St Petersburg Cleft and Craniofacial Center – CPT, CFT
Tampa Bay Region Children’s Medical Services Building
13101 Bruce B Downs Blvd
Tampa, FL 33612-3803
Team Phone: (727) 217-7853
Team Fax: (727) 217-7923
Patient Age Range: 0-21
Team Leader: Mary H. Pavan, MD, FAAP

Team Coordinator: Heather Soechtig, RN
Team Email: heather.soechtig@flhealth.gov

Crouzon syndrome

Nicklaus Children’s Hospital
3100 SW 62nd Avenue
Miami, FL 33155
Phone: (305) 662-8237
Team Director: Mislen Bauer, MD
Team Coordinator: Anna Pelligra
Joe DiMaggio Craniofacial Program
4651 Sheridon Street Suite 150
Hollywood, FL 33028
Phone: (954) 265-6314
Team Leader: Margaret Grell, MD
Coordinator: Bobby Brasher, ARNP
Children’s Craniofacial Center
St. Joseph’s Children’s Hospital of Tampa
3003 W. Dr. Martin Luther King Jr. Blvd.
Tampa, FL 33607-6307
Phone: (813) 870-4565
Fax: (813) 554-8189
Team Director: Pat Ricalde, DDS, MD
Team Coordinators: Jovanna Nogues, MS CCC/SLP
Andrea Godwin, MA CCC/SLP
Tampa Saint Petersberg Cleft and Craniofacial Center at
All Children’s Hospital Johns Hopkins Medical
Tampa Bay Region Children’s Medical Services Building
13101 N. Bruce B. Downs Boulevard

Tampa, FL 33612
Phone: (727) 767-2930

Director: Mary Pavin, M.D.
Coordinator: Cathy Conley

Email: cconley6@jhmi.edu
Website: www.allkids.org

Dubowitz syndrome
Florida State Association:

Meetings occur in January, April, August and October.
Contact: Cynthia Moynihan
Email: hlaaflorida@yahoo.com
State Chapter Coordinator: Tanya Williams
Email: fl2016scc@gmail.com
Broward County Chapter:
Meets the 2nd Tuesday of each month at 2 p.m.
John Knox Village Auditorium
200 Lakeside Circle (Hibiscus Room)
Pompano Beach, FL 33060
Contact: Howard Alenier
Phone: (240) 888-4747
Email: halenier@gmail.com
Contact: Peter Liszewski
Phone: (703) 399-5593
Email: pal5785@gmail.com
Central Florida Chapter:
Meets First Tuesday, 1:00 – 2:30 p.m. (September – May)
Churchill Street Village Recreation Center
2375 Churchill Downs (Triple Crown Room)
The Villages, FL 32162
Contact: Andy Finlayson
Phone: (352) 391-5155
Email: abf1144@yahoo.com
Contact: Janis Ward
Phone: (352) 430-3088
Email: janisward2@gmail.com
Gainesville Chapter
Meets 4th Monday of each month at 3:00 p.m.
Alachua County Senior Recreation Center
5701 NW 34th Blvd.
Gainesville, FL 32605
Contact: Lynn Rousseau
Phone: (352) 331-9808
Email: HLAGainesville@aol.com
Gulf Coast Chapter
Meets 1st Wednesday of each month at 12:30 p.m. (September – May)
Safety Harbor Public Library
101 N. Second Street
Safety Harbor, FL 34695
Meets for captioned movie, 2nd Saturday of Jun, July and Aug between 12 p.m. and 1 p.m., pending movie selection/time.
Regal Citrus Park Stadium 20
7999 Citrus Park Town Center Mall
Tampa, FL 33625
Contact: Debbe Hagner
Phone: (727) 271-0770 (Text only)
Email: debbehagner@yahoo.com
Contact: Tess Crowder
Phone: (813) 843-7716
Email: Tmt.Tess@outlook.com
Jacksonville Chapter
Meets 3rd Tuesday, 6:30 p.m. except Jul-Aug-Dec
Nemours Children’s Clinic, 10th Floor Auditorium
807 Childrens Way
Jacksonville, FL 32207
Contact: Thomas B. Logue
Phone: (904) 631-6357
Email: thomasblogue@gmail.com
Contact: Judy G. Martin
Phone: (904) 778-2265
Email: judygmartin@bellsouth.net
Contact: Laura Terrebonne
Email: radiant1028@hotmail.com
Lakeland Chapter
Meets every 2nd Thursday of each month, 6 – 7:30 p.m.
First Presbyterian Church (Multipurpose Room A)
175 Lake Hollingsworth Dr.
Lakeland, FL 33801
Contact: Art Matlock
Phone: (863) 853-3130
Email: hla-lakeland@hotmail.com
Lee County Chapter
Meets second Friday of the month from 10:30 a.m. to noon
Deaf and Hard of Hearing Center
1860 Boy Scout Dr. Ste 208
Fort Myers, FL 33907
Contact: Ruth Evers
Email: ladyruth52@gmail.com
Contact: Heather Golden
Email: heather.golden@oeius.org
Miami Chapter
Meets the 2nd Thursday of every month from 1:00 to 3:00 p.m.
The City of Coral Gables Adult Activity Center
2 Andalusia Avenue
Coral Gables, FL 33134
Contact: Joe Dashiell
Email: Joe.Dashiell@gmail.com
Contact: Joe Nadeau
Email: joe@jenadeau.com
Orlando Chapter
Meets 3rd Tuesday of every month at 6:30pm
O’Charley’s Restaurant
8081 Turkey Lake Rd
Orlando, FL 32819
Contact: Merv & Bev Daniels
Phone: (407) 656-9283
Email: mmbdaniels@att.net
Contact: Jim Diaz
Phone: (407) 489-7531
Email: combobulated@earthlink.net
Sarasota/Manatee Chapter
Meets every 2nd Wednesday at 1:30 p.m.
North Sarasota Library
2801 Newtown Blvd
Sarasota, FL 34230
After hours chapter meets 4th Thursday at 6 p.m. every odd number month (Jan. Mar. May. July. Sept. Nov.)
Center for Arts & Humanities
1226 N. Tamiami Trail
Sarasota, FL 34236
Contact: JoAnne DeVries
Phone: (941) 320-8825
Email: jdv.devries8@gmail.com
Contact: Anne Taylor
Phone: (941) 320-8825
Email: anne7257@gmail.com
South Palm Beach County Chapter
Meets third Friday, 10:00 am, Sept-May
South County Civic Center (Room A)
16700 Jog Rd
Delray Beach, FL 33446
Contact: Manny Pallant
Email: mpallant@outlook.com
Contact: Michael Goldberg
Email: mgoldberg1950@gmail.com
Sun City Center Chapter
Meets 3rd Tuesday at 9 a.m., Sept – May
St. Andrew Presbyterian Church (Fellowship Hall)
1239 Del Webb Blvd., W.
Sun City Center, FL 33573
Contact: Richard Herring
Phone: (813) 677-2329
Email: rhermann1938@gmail.com
Contact: Bill Dauber
Phone: 813-951-7193
Email: billyjake827@gmail.com
Tampa Chapter
Meets 1st Tuesday of the month at 6:30 PM, Sept to May.
T.G.I. Friday’s Meeting Room
2501 East Fowler Avenue
Tampa, FL 33612
Meets for captioned movie, 2nd Saturday of Jun, July and Aug between 12 p.m. and 1 p.m., pending movie selection/time.
Regal Citrus Park Stadium 20
7999 Citrus Park Town Center Mall
Tampa, FL 33625
Contact: Roseanne Boyle
Phone: 8312-503-3452
Email: rokraft@msn.com
Treasure Coast Chapter
Meets third Saturday, 10:30 am (September – May)
Indian River State College-Mueller Campus (See Chapter website for room location)
6155 College Lane
Vero Beach, FL 32966
Contact: Cheryl Nolte
Phone: (772) 468-0123
Email: clnolte@msn.com
Developmental Disabilities
The Arc of Florida
2892 Mahan Dr Ste 1
Tallahassee, FL 32308-5462
Phone: (850) 921-0460
Diaphragmatic Hernia
SW Florida Support Group
Naples Coordinator: Barbara Southwick
Phone: (239) 777-0731
Ft. Myers Coordinator: Diane Walcher
Phone: (239) 849-7351
Miami Coordinator: Maria Kniepple

Email: miami22q@gmail.com

Down Syndrome
Gold Coast Down Syndrome Organization

Boynton Beach, FL
Phone: (561) 752-3383
Manasota BUDS
Bradenton, FL
Phone: (941) 907-0499
F.R.I.E.N.D.S. Support
Brandon, FL
Phone: (813) 245-2782
Treasure Coast Down Syndrome Awareness Group
Hobe Sound, FL
Phone: (772) 546-7057
Down Syndrome Association of Jacksonville
Jacksonville, FL
Phone: (904) 353-6300
Website: www.dsaj.org
Down Syndrome Association of Central Florida
Orlando, FL
Phone: (407) 478-5621
Website: www.dsacf.org
Down Syndrome Foundation of Florida
Orlando, FL
F.E.D.S. of Brevard
Merritt Island, FL
Fun Coast Down Syndrome Association
Palm Coast, FL
Phone: (386) 447-8034
Broward Gold Coast Down Syndrome Organization
Sunrise, FL
Phone: (954) 577-4122

 

Dwarfism
Contact: Chris O’Neill

Edwards syndrome
Contact: Glen and Gina Csontos

Lutz, FL
Phone: (813) 242-2558, (813) 785-7995, (813) 786-5838
Contact: Nicol Wachter
Middleburg, FL
Phone: (904) 838-7321
Contact: Kristen Thompson
Gainesville, FL
Phone: (352) 812-2019
Epilepsy
Epilepsy Foundation Florida
1200 NW 78th Ave, Suite 400
Miami, Florida 33126-1891
Phone: (305) 670-4949
Toll Free: (877) 553-7453
Hydrocephalous
Contact: Cheryl Freestone & Susan Andersen Moore
Intellectual Disabilities
The Arc of Florida
2892 Mahan Dr Ste 1
Tallahassee, FL 32308-5462
Phone: (850) 921-0460

Patau Syndrome

Contact: Glen and Gina Csontos
Lutz, FL
Phone: (813) 242-2558, (813) 785-7995, (813) 786-5838
Contact: Nicol Wachter
Middleburg, FL
Phone: (904) 838-7321
Contact: Kristen Thompson
Gainesville, FL
Phone: (352) 812-2019

Pierre Robin Sequence

University of Florida Craniofacial Clinic Team – CPT, CFT
1699 SW 16th Avenue
Bldg A
Gainesville, FL 32608-1158
Phone: (352) 627-9326
Fax: (352) 627-4564
 Patient Age Range: 0-21
Team Leaders: Virginia L. Dixon-Wood, MA; Donald Fillipps, MD

Team Coordinator: Holly Shenk, RN, CPN

Joe DiMaggio Craniofacial Center – CPT, CFT
4651 Sheridan St Ste 150
Hollywood, FL 33021-3443
Phone: (9540 265-1472
Fax: (954) 983-6243
Patient Age Range: 0-99
Team Leaders: Margaret Grell, MD; Roman Yusupov, MD
Team Coordinator: Bobby J. Brasher, ARNP
Jacksonville Cleft & Craniofacial Program – CPT
820 Prudential Dr Ste 412
Jacksonville, FL 32207-8206
Phone: (904) 633-0935
Fax: (904) 633-0944
Patient Age Range: 0-18
Team Leader: Jeff Goldhagen, MD
Team Coordinator: Lida Sarnecky, RN
Website: http://hscj.ufl.edu/pediatrics/cleft
Holtz Children’s Hospital and University of Miami/Jackson Memorial Medical Center – CPT
1611 NW 12th Ave
Miami, FL 33136-1005
Phone: (305) 243-4500
Fax: (305) 243-4535
Patient Age Range: 0-21
Team Leader: Seth R. Thaller, MD, DMD

Team Coordinator: Jessica Loaiza

Nicklaus Children’s Hospital Craniofacial Center – CPT, CFT
3100 SW 62nd Ave
Miami, FL 33155-3009
Phone: (305) 662-8237
Fax: (305) 663-8518
Patient Age Range: 0-99
Team Leader: Mislen Bauer, MD
Team Coordinator: Anna R. Pelligra, ARNP
Email: anna.pelligra@mch.com
Website: http://www.nicklauschildrens.org
Johns Hopkins All Children’s Hospital Cleft and Craniofacial Center – CPT, CFT
Johns Hopkins All Children’s Hospital
601 5th St S Dept 70-7862
Saint Petersburg, FL 33701-4804
Phone: (727) 767-2930
Fax: (727) 767-8427
Patient Age Range: 0-21
Team Leader: Mary H. Pavan, MD, FAAP
Team Coordinator: Cathy Conley, BSN
Email: cconley6@jhmi.edu
 St Joseph’s Children’s Craniofacial Center – CPT, CFT
3003 W Dr Martin Luther King Jr Blvd Fl 2
Tampa, FL 33607-6307
Phone: (813) 870-4565
Fax: (813) 357-1798
 Patient Age Range: 0-99
Team Leader: Pat Ricalde, DDS, MD

Team Coordinators: Andrea F. Godwin, MA; Jovanna Michelle Nogues, MS, CCC SLP

Tampa – St Petersburg Cleft and Craniofacial Center – CPT, CFT
Tampa Bay Region Children’s Medical Services Building
13101 Bruce B Downs Blvd
Tampa, FL 33612-3803
Team Phone: (727) 217-7853
Team Fax: (727) 217-7923
Patient Age Range: 0-21
Team Leader: Mary H. Pavan, MD, FAAP
Team Coordinator: Heather Soechtig, RN
Team Email: heather.soechtig@flhealth.gov
Polymicrogyria
Contact: Catrina Byrge
Contact: Brandy Davis
Contact: Caitlan Bathurst

 

Prader-Willi syndrome

Florida PWSA
Address: PO Box 620369
Oviedo, FL 32762
Phone: (321) 229-2986
Contact: Beverly Delemos
Phone: 321-229-2984

 

Spina Bifida

SBA of Central Florida
Karen Allen, Executive Director
100 West Lucerne Circle, Suite 100-M
Orlando, FL 32801
Phone: (407) 248-9210
Tessier cleft
University of Florida Craniofacial Clinic Team – CPT, CFT
1699 SW 16th Avenue
Bldg A
Gainesville, FL 32608-1158
Phone: (352) 627-9326
Fax: (352) 627-4564
 Patient Age Range: 0-21
Team Leaders: Virginia L. Dixon-Wood, MA; Donald Fillipps, MD

Team Coordinator: Holly Shenk, RN, CPN

Joe DiMaggio Craniofacial Center – CPT, CFT
4651 Sheridan St Ste 150
Hollywood, FL 33021-3443
Phone: (9540 265-1472
Fax: (954) 983-6243
Patient Age Range: 0-99
Team Leaders: Margaret Grell, MD; Roman Yusupov, MD
Team Coordinator: Bobby J. Brasher, ARNP
Jacksonville Cleft & Craniofacial Program – CPT
820 Prudential Dr Ste 412
Jacksonville, FL 32207-8206
Phone: (904) 633-0935
Fax: (904) 633-0944
Patient Age Range: 0-18
Team Leader: Jeff Goldhagen, MD
Team Coordinator: Lida Sarnecky, RN
Website: http://hscj.ufl.edu/pediatrics/cleft
Holtz Children’s Hospital and University of Miami/Jackson Memorial Medical Center – CPT
1611 NW 12th Ave
Miami, FL 33136-1005
Phone: (305) 243-4500
Fax: (305) 243-4535
Patient Age Range: 0-21
Team Leader: Seth R. Thaller, MD, DMD

Team Coordinator: Jessica Loaiza

Nicklaus Children’s Hospital Craniofacial Center – CPT, CFT
3100 SW 62nd Ave
Miami, FL 33155-3009
Phone: (305) 662-8237
Fax: (305) 663-8518
Patient Age Range: 0-99
Team Leader: Mislen Bauer, MD
Team Coordinator: Anna R. Pelligra, ARNP
Email: anna.pelligra@mch.com
Website: http://www.nicklauschildrens.org
Johns Hopkins All Children’s Hospital Cleft and Craniofacial Center – CPT, CFT
Johns Hopkins All Children’s Hospital
601 5th St S Dept 70-7862
Saint Petersburg, FL 33701-4804
Phone: (727) 767-2930
Fax: (727) 767-8427
Patient Age Range: 0-21
Team Leader: Mary H. Pavan, MD, FAAP
Team Coordinator: Cathy Conley, BSN
Email: cconley6@jhmi.edu
 St Joseph’s Children’s Craniofacial Center – CPT, CFT
3003 W Dr Martin Luther King Jr Blvd Fl 2
Tampa, FL 33607-6307
Phone: (813) 870-4565
Fax: (813) 357-1798
 Patient Age Range: 0-99
Team Leader: Pat Ricalde, DDS, MD

Team Coordinators: Andrea F. Godwin, MA; Jovanna Michelle Nogues, MS, CCC SLP

Tampa – St Petersburg Cleft and Craniofacial Center – CPT, CFT
Tampa Bay Region Children’s Medical Services Building
13101 Bruce B Downs Blvd
Tampa, FL 33612-3803
Team Phone: (727) 217-7853
Team Fax: (727) 217-7923
Patient Age Range: 0-21
Team Leader: Mary H. Pavan, MD, FAAP
Team Coordinator: Heather Soechtig, RN
Team Email: heather.soechtig@flhealth.gov
Trisomy 9
Contact: Glen and Gina Csontos
Lutz, FL
Phone: (813) 242-2558, (813) 785-7995, (813) 786-5838
Contact: Nicol Wachter
Middleburg, FL
Phone: (904)838-7321
Contact: Kristen Thompson
Gainesville, FL
Phone: (352) 812-2019
Turner’s syndrome
Cardiology:
 Dr. Arwa Saidi
Pediatric Cardiology
2000 SW Archer Road
Gainesville, Florida  32608
Phone: (352) 273-7770
 Dr. Cecilio Lopez
Pediatric Cardiology
3100 SW 62 Ave- Cardiology ACB – 2nd Fl
Miami, Florida  33155
Phone: (305) 662-8301
 Jennifer Co-Vu, M.D.
Congenital Heart Disease
Director, Fetal Cardiac Program
UF Health Congenital Heart Center
1600 SW Archer Road – Box 100296
Gainesville, FL 32610
Phone: (352)273-7770
Clinics:
University of Florida Health
200 SW Archer Road
Gainesville, FL 32608
Phone: (352) 265-PEDS, (352) 273-5625
Elizabeth Fudge, M.D.
Monthly/All Ages
 All Children’s Hospital
501 6th Avenue South,
St. Petersburg, FL 33701
Melissa Crenshaw, M.D.
Phone: (727) 898-7451
Bi-Monthly
Endocrinology:
Dr. Sherief M. Kamel, MD
Endocrinology
633 West 19th Street
Destin, Florida 32405
Phone: (850) 522-5490
 Dr. Nelly Mauras
Pediatric Endocrinology
807 Children’s Way
Jacksonville,  Florida 32207
Phone: (904) 697-3600
Dr Elizabeth Fudge
Pediatric Endocrinology
1600 SW Archer Rd
Gainesville, Florida 32608
Phone: (352)334-1390
Dr. Richard Banks
Pediatric Endocrinology
2nd floor, 60 W Gore St
Orlando, Florida  32806
Phone: (321) 841-3303
Dr. Melissa Crenshaw
Pediatric Endocrinology
501 6th Avenue South
St. Petersburg, Florida 33701
Phone: (727)898-7451
Online Support:
Achondroplasia: Achondroplasia!!, Achondroplasia Club
Aicardi syndrome: Aicardi syndrome
Alobar Holoprosencephaly: Alobar Holoprosencephaly
Amniotic Band syndrome: Amniotic band syndrome (ABS)
Angelman syndrome: Angelman Syndrome Foundation
Apert syndrome: Apert International (Apert USA)
Aplasia Cutis Congenita: Aplasia Cutis Congenita Support Group
Arthrogryposis: Arthrogryposis
Asparagine Synthetase Deficiency: Asparagine Synthetase Deficiency (ASNS gene)
Ataxic Cerebral Palsy: Families with children who have Ataxic Cerebral Palsy
Autism:
Bi-lateral Renal Agenesis: Bi-lateral Renal Agenesis (Potters Syndrome)
Blind: Family ConnectBlind and visually impaired support group
Bohring-Optiz syndrome: Bohring-Optiz Syndrome Connection
Cerebral Pals: United Cerebral PalsyUCP of Central Florida, United Cerebral Palsy of Tampa Bay,
CHARGE syndrome: CHARGE Syndrome
Congenital Heart Defect: Children with congenital heart defects, Breastfeeding Children with Congenital Heart Defects, Congenital Heart Defect Healthy Eating Group, Adults with Congenital Heart Defects 
Cleft Lip/Palate: Support Group for Adults born with Cleft Lip and Palates, Cleft Lip and Palate Foundation of Smiles, Cleft Lip & Palate Association
Clubbed Feet: Clubbed Foot support group, Club Feet Support Group for Parents
Cornelia De Lange syndrome: Cornelia De Lange Syndrome
Cortical Visual Impairment: Cortical Visual Impairment (CVI) Awareness
Crouzon syndrome: Crouzon Syndrome
Cystic Hygroma: Cystic Hygroma
Cytomegalovirus (CMV): CMV Family Support
Dandy Walker syndrome: Dandy-Walker Syndrome, Dandy Walker parents,
Deaf: Community for the Deaf and Hard of Hearing, Parents of Hearing Impaired Children
Dubowitz syndrome: Dubowitz Syndrome Network
Developmental Disabilities: Developmental Disabilities Support Page,  The Arc of Florida, 
Diaphragmatic Hernia: Florida Cherubs- Congenital Diaphragmatic Hernia Charity
DiGeorge syndrome: DiGeorge Syndrome, 22q11.2 Deletion, DiGeorge, VCFS etc
Down syndrome: National Down Syndrome Society
Dwarfism: Dwarfism, Little People of the World Organization,
Edwards syndrome: Edwards syndrome (trisomy18), Edwards Syndrome Families & Support – Trisomy 18, Trisomy 18 Foundation Parents Connect
Encephalocele: Encephalocele Parent Support, Encephalocele Support
Epilepsy: Epilepsy Support Group
Hydrocephalus: State of Florida Hydrocephalus Association Community Network
Hydrops Fetalis: Hydrops Fetalis Support Group, Hydrops Fetalis Parents Support Group
Intellectual Disability: Intellectual Disabilities Support GroupThe Arc of Florida, 
Koolen de Vries syndrome: Koolen de Vries Syndrome – 17q21.31 Microdeletion Syndrome Support Group
Limb Difference: Beautiful Limb Differences, limb difference makes no difference
Lissencephaly: Lissencephaly,  Lissencephaly Network
McCune-Albright syndrome: MAS/FD McCune-Albright Syndrome/Fibrous Dysplasia- The MAGIC Foundation, McCune Albright Syndrome and Fibrous Dysplasia
Microcephaly: Microcephaly Support Group,  Foundation for Children with Microcephaly- Official Group, Microcephaly
Moebius syndrome: Many Faces of Moebius Syndrome, Moebius syndrome Technology
Nager syndrome: Nager Syndrome
Patau syndrome: Trisomy 13 Life- Living with Patau Syndrome
Pierre Robin Sequence: Pierre Robin Sequence, Pierre Robin Sequence Support, Awareness & Research,
Polymicrogyria: Polymicrogyria (PMG) Support, PMG Awareness Organization’s Group Page (polymicrogyria)
Potocki-Shaffer syndrome: Potocki Shaffer syndrome Family Group
PPP2R5D: PPP2R5D Families
Prader-Willi syndrome: Prader Willi Syndrome Open Forum, Prader-Willi Support, Prader- Willi Syndrome Association
Renal Agenesis: Born With A Single Kidney
Rhizomelic Chondrodysplasia Punctata (RCDP): RCDP/Rhizomelic Chondrodysplasia Punctata
Sanfilippo syndrome: Sanfilippo syndrome Support Group
Semi-lobar Holoprosencephaly: Our Olive Grace-  Semi-lobar Holoprosencephaly
Spina Bifida: United By Spina bifida
Symbrachydactyly: Symbrachydactyly, Helping Hands (Symbrachydactyly)
Tessier cleft: Tessier Clefts
Trisomy 9: Trisomy 9 Family 
Turner syndrome: Turner syndrome,  Turner Syndrome Connections 
VACTERL/VATER Association: VATER and VACTERL Association Awareness, Vacterl and vater Association group for parents and families
Ventriculomegaly:  Ventriculomegaly, Babies with ventriculomegaly

Our whole mission at Orange Socks is to be there for you.

Our whole intent is to guide you from a resources page to a forum for parents…from the links to national organizations to providing you with support where the expectant parent can be linked with a parent who has a similar situation and diagnosis. We are there to support and encourage you.

Orange Socks knows that there is no greater pain in your heart than the knowledge that your child will be born with a disability or lifelong condition, or diagnosed with one at a very young age. And it is with tremendous humility that we look forward to helping you face this challenge. Even as your heart is heavy, there’s light at the end of every tunnel. Getting to it is our job.

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