Kentucky

Suggest a Resource

Achondroplasia
Contact: Dee Dee Allemon

 

Angelman syndrome
Kentucky Assistive Technology Service (KATS) Network
Charles McDowell Center
200 Juneau Drive – Ste 200
Louisville KY, 40234
V/TTY: (800) 327-5287 (KY)
V/TTY: (502) 429-4484
Website: http://www.katsnet.org

Epilepsy Foundation of Kentuckiana
982 Eastern Parkway
Louisville, KY, 40217
Phone: (866) 275-1078
Phone: (502) 637-4440
Kentucky Speech-Language-Hearing Association
838 East High Street, Suite 263
Lexington, KY, 40502
Phone: (800) 837-2446

 

Autism
Autism Society of the Bluegrass
453 Rookwood Parkway
Lexington , KY 40505
Phone: (859) 299-9000
Contact: Sara Spragens
Email: sspragens@insightbb.com
Website: http://www.asbg.org

Autism Society of Western Kentucky

PO Box 1647 230 Second Street
Henderson, KY 42419
Phone: (270) 826-0510
Contact: Nancy Boyett

Kelly Autism Program

Wendell Foster Campus 815 Triplett St
Owensboro, KY 42303
Phone: 270-852-1438

Turning Point for Autism

PO Box 7721
Goshen, KY 40257
Phone: (502) 899-9128
Contact: Brandi Vittitow

Support Groups:
Advocates for Autism Awareness
Bardstown, KY 40004
Phone: (502) 349-0214
Email: chadew7275@aol.com
Website: http://www.louisville.edu/education/kyautismtraining

Autism Support Group of Muhlenburg County

510 W. Main St
Powderly, KY 42367
Phone: (270) 338-2871
Contact: Patty Williams or Wendy Everly

Autism Support Network of Owensboro

4412 Hunters Trace
Owensboro, KY 42303
Phone: (270) 926-0700
Contact: Tisha Ziemer
Email: tishaziemer@adelphia.net

Fort Knox Autism Support Group
12th Armor Div Ave Building 5101
Fort Knox, KY 40121
Phone: (502) 624-5419

Bardstown Autism Support Group
1012 Cliffwood Dr.
Bardstown, KY 40004
Email: chadew@accessky.net

Barren River Area Autism Support Groups
922 Happy Valley Rd.
Glasgow, KY 42141
Contact: Linda Veldman
Email: schooltherapies@tjsamson.org

Additional Resources: https://www.autismspeaks.org/resource-guide/state/KY

 

Blind
Educational Services:

Kentucky Department of Education: Division of Exceptional Children Services
500 Mero Street
Capital Plaza Towers
Room 801
Frankfort, KY 40601
Phone: (502) 564-4970
Fax: (502) 564-6721
School for the Blind
Kentucky School for the Blind
1867 Frankfort Avenue
Louisville, KY 40206
Phone: (502) 897-1583 243
Fax: (502) 897-2994
Instructional Materials Center
Kentucky Instructional Materials Resource Center
Kentucky School for the Blind
1867 Frankfort Avenue
Louisville, KY 40206
Phone: (502) 897-1583 232
Fax: (502) 897-2994
NLS Library:
Kentucky Talking Book Library
300 Coffee Tree Road
Frankfort, KY 40601
Phone: (502) 564-5791
Fax: (502) 564-5773
Toll-Free: (800) 372-2968
Other Agencies in Kentucky:
American Printing House for the Blind
1839 Frankfort Avenue
PO Box 6085
Louisville, KY 40206-0085
Phone: (502) 895-2405
Fax: (502) 899-2274
Toll-Free: (800) 223-1839
Kentucky First Steps
Department for Public Health
275 East Main Street, HS2WC
Frankfort, KY 40621
Phone: (502) 564-3756
Fax: (502) 564-8389
Toll-Free: (800) 442-0087
Low Vision Services of Kentucky
120 North Eagle Creek
Suite 501
Lexington, KY 40509
Phone: (859) 977-1129 146
Fax: (859) 263-3757
University of Kentucky: Deaf-Blind Project
229 Taylor Education Building
University of Kentucky
Lexington, KY 40506
Phone: (859) 257-3730
Fax: (859) 257-3835
Visually Impaired Preschool Services
1906 Goldsmith Lane
Louisville, KY 40218
Phone: (502) 636-3207
Fax: (502) 636-0024
Toll-Free: (888) 636-8477

 

Cerebral Palsy
Stepping Stones/UCP of Greater Cincinnati

2300 Drex Ave
Norwood, OH 45212
Phone: (513) 221-4606
Twitter: @SSPrograms
Website: https://steppingstonesohio.org/
CHARGE syndrome
Contact: Sarah Cawthon
Congenital Heart Defect
Contact: Dr. Juan Villafane
731 E. Broadway, Louisville, KY
Louisville, KY
Phone: (502) 584-3200
Medical Director: Juan Villafane, MD
Heart Center at Kosair Children’s Hospital
Kosair Children’s Hospital
Louisville, KY
Phone: (502) 585-4802
Medical Director: Walt Sobczyk, MD
Cleft Lip and/or Pallete
Craniofacial Anomalies, Cleft Lip & Palate Clinic – CPT
Commission for Children with Special Health Care Needs
310 Whittington Pkwy
Louisville, KY 40222-4927
Phone: 502.429.4430 x2043 x2014

Fax: 502.429.7161

Patient Age Range: 0-21
Team Leader: Mark Chariker, MD
Team Coordinators: Karen Ehalt, RN, BSN; Lisa Martin, RN

 

Deaf
Kentucky Chapters Coordinator:

Contact: Ronald Haynes
Phone: (502) 515-3762
Email: ron@hlaa-ky.org
Kentuckiana Chapter:
Meets second Tuesday of every month, 6:30 p.m. (Mar, Jun, Sept and Dec are off-site socials)
St. Leonard Parish School Library
440 Zorn Avenue
Louisville, KY 40206
Contact: Carla Trivedi
Phone: (502) 689-4011 (text only)
Email: Carla@hearinglossky.org
Kentucky Home Chapter
Meets fourth Monday, 6:30 p.m. every month
Socials – June & December – Check for location
Nelson County Public Library
201 Cathedral Manor
Bardstown, KY 40004
Contact: David Robertson
Phone: (502) 233-5774
Email: davidrobertsontutor@yahoo.com  or info@hearinglosskyhome.org
Lexington Chapter
Meets second Thursday, 6:30 pm, except January, July and December
Lexington Public Library Eastside Branch
3000 Blake James Drive
Lexington, KY 40509
Contact: Janny Scheeline
Phone: (859) 537-3135 (Text only)
Email: janny42350@yahoo.com

 

Developmental Disabilities
The Arc of Kentucky

706 E Main St Ste A
Frankfort, KY 40601-2408
Phone: (502) 875-5225

Down Syndrome
Down Syndrome of South Central Kentucky

Bowling Green, KY
Down Syndrome Association of Central Kentucky
Lexington, KY
Phone: (859) 494-7809
Website: www.dsack.org
Down Syndrome of Louisville, Inc.
Louisville, KY
Phone: (502) 495-5088
Green River Area Down Syndrome Association
Owensboro, KY
Phone: (270) 925-0195

 

Dwarfism
Dee Dee Allemon

 

Edwards syndrome
Joe and Diane Domhoff

Shelbyville, KY

 

Epilepsy

Epilepsy Foundation Kentuckiana
Kosair Charities Centre 982 Eastern Pkwy
982 Eastern Pkwy
Louisville, Kentucky 40217-1566
Phone: (502) 637-4440
Toll Free: (866) 275-1078

 

Intellectual Disabilities

The Arc of Kentucky
706 E Main St Ste A
Frankfort, KY 40601-2408
Phone: (502) 875-5225

 

Patau syndrome
Joe and Diane Domhoff

Shelbyville, KY

 

Pierre Robin Sequence
Craniofacial Anomalies, Cleft Lip & Palate Clinic – CPT

Commission for Children with Special Health Care Needs
310 Whittington Pkwy
Louisville, KY 40222-4927
Phone: (502) 429-4430 x2043 x2014

Fax: (502) 429-7161

Patient Age Range: 0-21
Team Leader: Mark Chariker, MD
Team Coordinators: Karen Ehalt, RN, BSN; Lisa Martin, RN

 

Polymicrogyria
Contact: Rebecca Dowel

Prader-Willi syndrome

Phone: (800) 926-4797

 

Spina Bifida

SBA of Kentucky
Contact: Shannon White
Louisville Office:
Kosair Charities Centre
982 Eastern Parkway, Box 18
Louisville, KY 40217
Phone: (866) 340-SBAK (7225) or (502) 637-7363
Lexington Office:
Shriners Hospital for Children
1900 Richmond Road
Lexington, KY 40502
Phone: (859) 268-5798

 

Tessier cleft

Craniofacial Anomalies, Cleft Lip & Palate Clinic – CPT
Commission for Children with Special Health Care Needs
310 Whittington Pkwy
Louisville, KY 40222-4927
Phone: 502.429.4430 x2043 x2014

Fax: 502.429.7161

Patient Age Range: 0-21
Team Leader: Mark Chariker, MD
Team Coordinators: Karen Ehalt, RN, BSN; Lisa Martin, RN
Trisomy 9
Contact: Joe and Diane Domhoff
Shelbyville, KY

 

Turner’s syndrome

Obstetrics and Gynecology:
 Dr. Lisle Dalton
125 E. Maxwell St.
Suite 140 and Suite 300
Lexington, Kentucky 40508
Phone: (859) 323-0005
Endocrinology:
Dr. Wilburn Smith III
Pediatric Endocrinology
740 S Limestone
Lexington, Kentucky 40536
Phone: (859) 323-6211; (859) 323-5404

 

Online Support:
Achondroplasia: LPA District 5
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: Autism Speaks National Capital Area
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 Palsy: United Cerebral Palsy,
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, Hearing Loss Association of America
Dubowitz syndrome: Dubowitz Syndrome Network
Developmental Disabilities: Developmental Disabilities Support Page 
Diaphragmatic Hernia: CDH Warrior Community Diaphragmatic HerniaKentucky 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 Kentucky Hydrocephalus Association Community Network
Hydrops Fetalis: Hydrops Fetalis Support Group, Hydrops Fetalis Parents Support Group
Intellectual Disability: Intellectual Disabilities Support Group
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
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,  Spina Bifida Association of Kentucky
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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