Indiana

Suggest a Resource

Achondroplasia
Contact: Dee Dee Allemon

Angelman syndrome
Assistive Technology

Easter Seals
INDATA Project
Assistive Technology Services
4740 Kingsway Dr
Indianapolis, IN, 46205
Phone: (317) 466-2013, (888) 466-1314
Epilepsy Foundation of Indiana
3901 W. 86th Street, Suite 380
Indianapolis, IN, 46268
Phone: (800) 526-6618, (317) 876-0600
Indiana Speech-Language-Hearing Association, ISHA
3125 Dandy Trail, Ste 110,
Indianapolis, IN 46214
Phone: (317) 916-4146

Website: http://www.islha.org

Autism

Indiana Resource Center for Autism

2853 East Tenth St.

Bloomington, IN 47408-2696

Phone: (812) 855-6508
Fort Wayne Autism Center
5750 Falls Drive Suite B

Fort Wayne, IN 46804

Phone: (260) 245-1455, (260) 245-1455
Contact: Laura Britton
Autism Society of Indiana
Indianapolis, IN

Phone: (800) 609-8449 X11

Contact: Dana Renay

Autism Advocated of Indiana

P.O. Box 285

Fishers, IN 46038

Phone: (317) 403-4308
Contact: Patty Reed
Support Groups:
Asperger Autism Group of Goshen

602 South Eighth Street

Goshen, IN 46526

Contact: Christine Guth

Autism Grandparents’s Support Group

4740 Kingsway Drive

Indianapolis, IN 46205

Phone: (317) 479-3231
Contact: Katy Wise

Evansville Vanderburgh School Corporation Autism Support Group

3501 E Lloyd Expy

Evansville, IN 47715

Phone: (812) 435-8442
Contact: Pam Hopper

Blind

Educational Services:
Indiana Department of Education: Office of Special Education
South Tower, Suite 600
115 W. Washington Street
Indianapolis, IN 46204
Phone: (317) 232-6610
Fax: (317) 232-8004
Toll-Free: (877) 851-4106
School for the Blind
Indiana School for the Blind
7725 North College Avenue
Indianapolis, IN 46240
Phone: (317) 253-1481
Fax: (317) 251-6511
NLS Library:
Evansville-Vanderburgh Public Library Talking Books Services
200 S.E. Martin Luther King Jr. Boulevard
Evansville, IN 47713
Phone: (812) 428-8235
Fax: (812) 428-8215
Toll-Free: (866) 645-2536
Indiana Talking Book and Braille Library, Indiana State Library
140 North Senate Avenue
Indianapolis, IN 46204
Phone: (317) 232-3684
Fax:(317) 232-3728
Toll-Free: (800) 622-4970
TDD/TTY: (317) 232-7763
Northwest Indiana Subregional Library for the Blind and Physically Handicapped, Lake County Public Library
1919 West 81st Avenue
Merrillville, IN 46410-5382
Phone: (219) 769-3541 323
Fax: (219) 769-0690
Talking Books for the Blind and Physically Handicapped, Bartholomew County Public Library
536 Fifth Street
Columbus, IN 47201
Phone: (812) 379-1277
Fax: (812) 379-1275
Toll-Free: (800) 685-0524 (Toll-Free)
Other Agencies:
ACB of Indiana
338 E. Ohio St.
Indianapolis, IN 46204-2180
Phone: (317) 638-3765
ADEC, Inc.
19670 State Road 120
P.O. Box 398
Bristol, IN 46507-0398
Phone: (574) 848-7451 2424
Fax: (574) 848-5917
Toll-Free: (877) 342-8954 7744
Bosma Enterprises
6270 Corporate Drive
Indianapolis, IN 46278
Phone: (317) 684-0600
Toll-Free: (866) 602-6762
Council of Schools for the Blind
Indiana School for the Blind and Visually Impaired
7725 N. College Avenue
Indianapolis, IN 46240-2504
Phone: (317) 253-1481
Easter Seals Crossroads Rehabilitation Center
4740 Kingsway Drive
Indianapolis, IN 46205
Phone: (317) 466-1000
Fax: (317) 466-2000
Toll-Free: (888) 466-1314
TDD/TTY: (317) 479-3232
Evansville Association for the Blind
500 North Second Avenue
Evansville, IN 47710
Phone: (812) 422-1181
Fax: (812) 424-3154
Indiana Educational Resource Center
7775 North College Avenue
Indianapolis, IN 46240-2504
Phone: (317) 554-2740
Fax: (317) 475-9181
Indiana First Steps
Family and Social Services Administration
402 West Washington Street
Room W-386
Indianapolis, IN 46204
Phone: (317) 233-9229
Fax: (317) 232-7948
Toll-Free: (800) 441-7837
Indiana University School of Optometry: Eye Care Centers
744 E. Third Street
Bloomington, IN 47405
Phone: (812) 855-8436
Fax: (812) 855-1683
League for the Blind and Disabled, Inc.
5821 South Anthony Boulevard
Fort Wayne, IN 46816
Phone: (260) 441-0551
Fax: (260) 441-7760
Toll-Free: (800) 889-3443

Cerebral Palsy
Stepping Stones/UCP of Greater Cincinnati

2300 Drex Ave
Norwood, OH 45212
Phone: (513) 221-4606
Twitter: @SSPrograms
Website: https://steppingstonesohio.org/
UCP of Greater Indiana
8020 Zionsville Rd
Indianapolis, IN 46268
Phone: (317) 871-4032
Website: http://www.ucpaindy.org

 

Congenital Heart Defect
Adolescent and Adult Congenital Heart Disease Program at IU Health

Riley Hospital for Children at IU Health
Indianapolis, IN
Phone: (317) 274-2954
Medical Director: W. Aaron Kay, MD

 

Cleft Lip and/or Pallete
Kids First Cleft-Craniofacial Clinics – CPT, CFT

7845 Carnegie Blvd
Fort Wayne, IN 46804
Phone: (260) 969-4113

Fax: (260) 969-4109

Patient Age Range: 0-99
Team Leaders: Allison Bergdoll, DDS; Joseph M. Mlakar, MD
Team Coordinators: Kimberly Hamilton; Rhonda McHenry, CST; Laura Quick, CDA; Erika Waszczak, RN
Peyton Manning Children’s Hospital Plastic Surgery and Craniofacial Center – CPT, CFT
8402 Harcourt Rd Ste 128
Indianapolis, IN 46260-2094
Phone: (317) 338-6731

Fax: (317) 338-6615

Patient Age Range: 0-99
Team Leader: Jason M. Blocksom, MD
Team Coordinator: Sarah C. Steinke, RN
Riley Hospital for Children Cleft and Craniofacial Anomalies Program – CPT, CFT
Riley Hospital for Children at IU Health
705 Riley Hospital Dr Rm 3538
Indianapolis, IN 46202-5109
Phone: (317) 944-2489

Fax: (317) 948-0939

Patient Age Range: 0-99
Team Leader: Patrick A. Gerety, MD
Team Coordinator: Caitlin Church, BS

Crouzon syndrome
Riley Hospital for Children
Plastic Surgery Office
705 Riley Hospital Drive
Indianapolis, IN 46202
Phone: (317) 274-2489
Team Director: Sunil Tholpady, MD
Team Coordinator: Caitlin Church

 

Dubowitz syndrome
Michiana Chapter

Meets every 3rd Weds, 6pm, except Jun, Jul, and Dec
Wakarusa Public Library
124 North Elkhart Street
Wakarusa, IN  46573-2006
Contact: Janice Neidigh
Phone: (574) 305-0145
Email: janneidigh@gmail.com
Contact: Marcia Parcell
Phone: (574) 361-6663
Email: marciaparcell@gmail.com

 

Developmental Disabilities
The Arc of Indiana

107 N Pennsylvania St Ste 800
Indianapolis, IN  46204-2423
Phone: (317) 977-2375

Email: thearc@arcind.org

 Website: www.arcind.org

Down Syndrome
Down Syndrome Family Connection

Bloomington, IN
Phone: (812) 339-2012
Down Syndrome Association of Central Indiana
Carmel, IN
Phone: (317) 574-9757
Down Syndrome Association of Northeast Indiana
Ft. Wayne, IN
Phone: (260) 471-9964
Website: www.dsani.org
Elkhart Co. Down Syndrome Support Group
Goshen, IN
Phone: (574) 534-3931
Down Syndrome Family Support and Advocacy Group (dba Michiana Down Syndrome)
Granger, IN
Phone: (574) 334-7734
Down Syndrome Association of Northwest Indiana
Highland, IN
Dads Appreciating Down Syndrome (D.A.D.S.)
Indianapolis, IN
Phone: (317) 523-5888
Down Syndrome Indiana
Indianapolis, IN
Phone: (317) 925-7617
Down Syndrome Support Assoc. of Southern Indiana
New Albany, IN
Phone: (812) 948-5182
SMILE on Down Syndrome
Newburgh, IN
Phone: (812) 925-6839

 

Dwarfism
Contact: Dee Dee Allemon

 

Edwards syndrome
Contact: Patti Lawson

 

Epilepsy

Epilepsy Foundation Indiana
PO Box 29422
Indianapolis, Indiana 46229
Phone: (317) 759-4502
Toll Free: (800) 526-6618

 

Intellectual Disabilities
The Arc of Indiana

107 N Pennsylvania St Ste 800
Indianapolis, IN  46204-2423
Phone: (317) 977-2375

 

Patau Syndrome
Contact: Patti Lawson

 

Pierre Robin Syndrome

Kids First Cleft-Craniofacial Clinics – CPT, CFT
7845 Carnegie Blvd
Fort Wayne, IN 46804
Phone: (260) 969-4113

Fax: (260) 969-4109

Patient Age Range: 0-99
Team Leaders: Allison Bergdoll, DDS; Joseph M. Mlakar, MD
Team Coordinators: Kimberly Hamilton; Rhonda McHenry, CST; Laura Quick; Erika Waszczak, RN
Peyton Manning Children’s Hospital Plastic Surgery and Craniofacial Center – CPT, CFT
8402 Harcourt Rd Ste 128
Indianapolis, IN 46260-2094
Phone: (317) 338-6731

Fax: (317) 338-6615

Patient Age Range: 0-99
Team Leader: Jason M. Blocksom, MD
Team Coordinator: Sarah C. Steinke, RN
Riley Hospital for Children Cleft and Craniofacial Anomalies Program – CPT, CFT
Riley Hospital for Children at IU Health
705 Riley Hospital Dr Rm 3538
Indianapolis, IN 46202-5109
Team Phone: (317) 944-2489

Team Fax: (317) 948-0939

Patient Age Range: 0-99
Team Leader: Patrick A. Gerety, MD
Team Coordinator: Caitlin Church, BS

 

Polymicrogyria ”
Aurora

Contact: Toni Womble
Louisville
Contact: Sammy Ehrhard

 

Prader-Willi syndrome ”

PWSA of Indiana
7536 Moonbeam Drive
Indianapolis, IN 46259

Phone: 574-286-3147
Contact: Brandon Watson

 

Spina Bifida

PO Box 19814
Indianapolis, IN 46219-0814
Phone: 317-592-1630
Contact: Shalon Perez
Website: www.sbain.org

Tessier cleft

Kids First Cleft-Craniofacial Clinics – CPT, CFT
7845 Carnegie Blvd
Fort Wayne, IN 46804
Phone: (260) 969-4113

Fax: (260) 969-4109

Patient Age Range: 0-99
Team Leaders: Allison Bergdoll, DDS; Joseph M. Mlakar, MD
Team Coordinators: Kimberly Hamilton; Rhonda McHenry, CST; Laura Quick, CDA; Erika Waszczak, RN
Peyton Manning Children’s Hospital Plastic Surgery and Craniofacial Center – CPT, CFT
8402 Harcourt Rd Ste 128
Indianapolis, IN 46260-2094
Phone: (317) 338-6731

Fax: (317) 338-6615

Patient Age Range: 0-99
Team Leader: Jason M. Blocksom, MD
Team Coordinator: Sarah C. Steinke, RN
Riley Hospital for Children Cleft and Craniofacial Anomalies Program – CPT, CFT
Riley Hospital for Children at IU Health
705 Riley Hospital Dr Rm 3538
Indianapolis, IN 46202-5109
Phone: (317) 944-2489

Fax: (317) 948-0939

Patient Age Range: 0-99
Team Leader: Patrick A. Gerety, MD
Team Coordinator: Caitlin Church, BS

Trisomy 9

Contact: Patti Lawson

 

Turner’s syndrome
Urology:

Dr. Mark Cain
Pediatric Urology
705 Riley Hospital Dr.,1st Floor
Indianapolis, Indiana 46202
Phone: (317) 944-8896
Dermatology:
Dr. Kristen Turchan
Pediatric Dermatology
11900 N Pennsylvania St #202
Carmel, Indiana 46032
Phone: (317) 926-3739
Obstetrics and Gynecology:
Tina Brickert
Certified Nurse Midwife
2209 John R. Wooden Dr.
Martinsville, Indiana 46151
Phone: (765)352-9536
Cardiology
Dr. Anne Farrell
Pediatric Cardiology
705 Riley Hospital Dr
Indianapolis, Indiana 46202
Phone: (317) 274-8906
 Dr. Emily Walvoord
Pediatric Cardiology
575 Riley Hospital Dr., 3rd Floor, MSA 3
Indianapolis,Indiana 46202
Phone: (317)944-3889
Endocrinology
Dr. Charmaine Quigley
Pediatric Endocrinology
705 Riley Hospital Dr. Ri 5960
Indianapolis, Indiana 46202
Phone: (317) 944-3889

 

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 Society of Indiana, Indiana Resource Center for Autism- Indiana University, Autism Moms Support Group in Indianapolis 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, United Cerebral Palsy Association of Greater Indiana
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 Indiana
Diaphragmatic Hernia: CDH Warrior Community Diaphragmatic Hernia
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 Indiana Hydrocephalus Association Community Network, Indiana Pediatric Hydrocephalus Foundation, Inc.
Hydrops Fetalis: Hydrops Fetalis Support Group, Hydrops Fetalis Parents Support Group
Intellectual Disability: Intellectual Disabilities Support Group, The Arc of Indiana
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 Indiana
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 Indiana
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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