Iowa

Suggest a Resource

 

Achondroplasia
Contact: Shannon Ciardelli
Email: shannon@aspenelectricinc.com
Website: http://www.lpadistrict9.org

 

Angelman Syndrome
Epilepsy Foundation North/Central Illinois, Iowa & Nebraska
321 W State St. #208
Rockford, IL 61101-1119
Phone: (815) 964-2689, (800) 221-2689
Email: efncil@efncil.org
Website: http://www.epilepsy.com/north-central-illinois-iowa-nebraska

Special Format Library
Iowa Department for the Blind
Library Services
524 Fourth Street
Des Moines, IA, 50309-2364
Phone: (800) 362-2587, (515) 281-1333
Email: contact@blind.state.ia.us
Website: https://blind.iowa.gov/library

Mental Health – Youth
State Mental Health Agency/State DD Program
Mental Health and Disabilities Services
Department of Human Services
Hoover State Office Building, 5th Floor
1305 E. Walnut Street
Des Moines, IA, 50319-0114
Phone: (515) 242-6845
Email: mmohrha@dhs.state.ia.us
Website: http://www.askresource.org/theprojects/pti.html

 

Autism
The Autism Society of Iowa
4549 Waterford Drive
Phone: (515) 327-9075, (888) 722-4799
Email: autism50ia@aol.com
Website: http://www.autismia.org

The Arc of Iowa
3821 71st St.
Urbandale, IA
Phone: (515) 210-6686
Email: casey@thearcofiowa.org
Website: http://www.thearcofiowa.org

ABA of Iowa
Bellevue, IA 52031
Phone: (563) 542 1052
Contact: Alison Mottet
Email: amottet@abaofiowa.org
Website: http://www.abaofiowa.org

Support Groups:
Sibshop
West Campus Therapeutic Recreation Dept.
Davenport, IA 52803
Phone: (563) 421-144
Email: 0nalpen@hotmail.com

Sioxland Autism Support Group
Phone: (712) 490-8939
Contact: Julie Case
Email: Siouxlandautism@live.com
Website: http://www.siouxlandautism.org

Additional Resources: http://www.autismspeaks.org/resource-guide/state/IA

 

Blind
Educational Services:
Iowa State Department of Education: Special Education
Grimes State Office Building
Des Moines, IA 50319-0146
Phone: (515) 281-4030
Fax: (515) 242-5988
Website: http://www.iowa.gov/educate/content/view/574/591/

School for the Blind
Iowa Educational Services for the Blind and Visually Impaired
1002 G Avenue
Vinton, IA 52349
Phone: (319) 472-5221
Toll-Free: (800) 645-4579
Email: jruegg@iowa-braille.k12.ia.us
Website: http://www.iowa-braille.k12.ia.us/

Exceptional Child Education Program
3332 Newburg Road Louisville, KY 40203
Phone: (502) 485-3011
Fax: (502) 485-6317
Website: http://www.jefferson.k12.ky.us/Programs/ECE/index.html

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
Email: chfs.firststeps@ky.gov
Website: http://chfs.ky.gov/dph/firststeps.htm

Low Vision Services of Kentucky
120 North Eagle Creek
Suite 501
Lexington, KY 40509
Phone: (859) 977-1129 146
Fax: (859) 263-3757
Email: jvanarsdall@retinaky.com
Website: http://lowvisionky.com

University of Kentucky: Deaf-Blind Project
229 Taylor Education Building
University of Kentucky
Lexington, KY 40506
Phone: (859) 257-3730
Fax: (859) 257-3835
Email: kydeaf1@kfb.k12.ky.us
Website: http://edsrc.uky.edu/DeafBlind/

Visually Impaired Preschool Services
1906 Goldsmith Lane
Louisville, KY 40218
Phone: (502) 636-3207
Fax: (502) 636-0024
Toll-Free: (888) 636-8477
Email: info@vips.org
Website: http://www.vips.org

NLS Library:
Iowa Library for the Blind and Physically Handicapped
Iowa Department for the Blind
524 Fourth Street
Des Moines, IA 50309-2364
Phone: (515) 281-1333
Fax: (515) 281-1378
Toll-Free: (800) 362-2587
TDD/TTY: (515) 281-1355
Email: library@blind.state.ia.us
Website: http://idblibrary.blind.state.ia.us/EOSWebOPAC/OPAC/Index.aspx

Other Agencies in Iowa:
Early Access Iowa
Early ACCESS Iowa (IDEA Part C)
400 E. 14th Street
Des Moines, IA 50319
Phone: (515) 281-8634
Fax: (515) 242-5988
Toll-Free: (888) 425-4371
Email: earlyaccessia@vnsdm.org
Website: http://www.earlyaccessiowa.org/

Iowa Center for Assistive Technology Education and Research
N168 Lindquist Center
Iowa City, IA 52317
Phone: (319) 335-5280
Email: icater@uiowa.edu
Website: http://www.education.uiowa.edu/centers/icater/home

Iowa Compass, Center for Disabilities and Development
100 Hawkins Drive
Center for Disabilities and Development
Iowa City, IA 52242-1011
Phone: (319) 353-8777
Fax: (319) 384-5139
Email: iowa-compass@uiowa.edu
Website: http://www.iowacompass.org

Prevent Blindness Iowa
1111 Ninth Street
Suite 250
Des Moines, IA 50314
Phone: (515) 244-4341
Fax: (515) 244-4718
Toll-Free: (800) 329-8782
Email: mail@preventblindnessiowa.org
Website: http://www.preventblindness.org/iowa/

Rehabilitation Services:
Iowa Department for the Blind
524 Fourth Street
Des Moines, IA 50309-2364
Local:(515) 281-1333
Fax: (515) 281-1263
Email: information@blind.state.ia.us
Website: http://www.idbonline.org

 

Congenital Heart Defect
Center for Craniofacial and Children’s Reconstructive Surgery – CPT, CFT
330 Laurel St Ste 1200
Des Moines, IA 50314-3044
Phone: (515) 643-5455
Fax: (515) 643-6459
Patient Age Range: 0-21
Team Leader: Samuel M. Maurice, MD
Coordinator: Janet Hanson, RN, BSN
Email: jhanson3@mercydesmoines.org
Website: http://www.mercydesmoines.org/childrenshospital/childrens-reconstructive-surgery

University of Iowa Cleft Palate-Craniofacial Team – CPT, CFT
200 Hawkins Dr
Oto CLINIC-21251 Pfp
Iowa City, IA 52242-1009
Phone: (319) 356-3345
Fax: (319) 356-4547
Patient Age Range: 0-99
Team Leaders: Mark D. Fisher, MD; Deborah Kacmarynski, MD, MS
Coordinator: Deborah J. Strike, BSN (Nursing)
Email: deborah-strike@uiowa.edu
Website: http://www.uihealthcare.org/medical-services/otolaryngology/

 

Dubowitz syndrome
Central Iowa Chapter
Contact: Martha Meyer
Email: marthalmeyer@gmail.com
Contact: Betty Hebard
Email: achebard@hotmail.com

 

Developmental Disabilities
The Arc of Iowa
114 S. 11th Street
West Des Moine, IA 50265
Phone: (515) 508-1214
Email: doug49203@yahoo.com
Website: http://www.thearcofiowa.org

 

Down syndrome
Hawkeye Area Down Syndrome Association
Cedar Rapids, IA
Email: eharlan@hadsa.org
Website: http://www.hadsa.org

Tri-State Down Syndrome Network
Sioux Center, IA
Phone: (712) 722-2142
Email: maassen@mtcnet.net

Northwest Iowa Down Syndrome Society
Spencer, IA
Phone: (712) 580-6671

Designer Genes Down Syndrome Group
Waterloo, IA
Email: designergenes2005@yahoo.com

 

Dwarfism
Contact: Shannon Ciardelli
Email: shannon@aspenelectricinc.com
Website: http://www.lpadistrict9.org

 

Edwards syndrome
Contact: Barb VanHerreweghe
Phone: (800) 716-SOFT
Email: barbsoft@rochester.rr.com

 

Epilepsy
Epilepsy Foundation North/Central Illinois Iowa & Nebraska
321 W State St #208
Rockford, Illinois 61101-1119
United States
Phone: (815) 964-2689
Toll Free: (800) 221-2689

 

Intellectual Disabilities
The Arc of Iowa
114 S. 11th Street
West Des Moine, IA 50265
Phone: (515) 508-1214
Email: doug49203@yahoo.com
Website: http://www.thearcofiowa.org

 

Patau syndrome
Contact: Barb VanHerreweghe
Phone: (800) 716-SOFT
Email: barbsoft@rochester.rr.com

 

Pierre Robin Sequence
Center for Craniofacial and Children’s Reconstructive Surgery – CPT, CFT
330 Laurel St Ste 1200
Des Moines, IA 50314-3044
Phone: (515) 643-5455
Fax: (515) 643-6459
Patient Age Range: 0-21
Team Leader: Samuel M. Maurice, MD
Coordinator: Janet Hanson, RN, BSN
Email: jhanson3@mercydesmoines.org
Website: http://www.mercydesmoines.org/childrenshospital/childrens-reconstructive-surgery

University of Iowa Cleft Palate-Craniofacial Team – CPT, CFT
200 Hawkins Dr
Oto CLINIC-21251 Pfp
Iowa City, IA 52242-1009
Phone: (319) 356-3345
Fax: (319) 356-4547
Patient Age Range: 0-99
Team Leaders: Mark D. Fisher, MD; Deborah Kacmarynski, MD, MS
Coordinator: Deborah J. Strike, BSN
Email: deborah-strike@uiowa.edu
Website: http://www.uihealthcare.org/medical-services/otolaryngology/

 

Prader-Willi syndrome
PWSA of Iowa
15130 Holcomb Avenue
Clive, IA 50325
Phone: (515) 770-5297
Contact: Edie Bogaczyk
Email: edieiowa@gmail.com
Website: http://www.pwsaiowa.org/

 

Spina Bifida
SBA of Iowa
8525 Douglas Ave. Suite 39
Urbandale, IA 50322
Phone: (515) 278-7013
Contact: Leslie L. Garman, CFRE
Email: Leslie.Garman@sbaia.com
Website: http://www.sbaia.org

 

Tessier Cleft
Center for Craniofacial and Children’s Reconstructive Surgery – CPT, CFT
330 Laurel St Ste 1200
Des Moines, IA 50314-3044
Phone: (515) 643-5455
Fax: (515) 643-6459
Patient Age Range: 0-21
Team Leader: Samuel M. Maurice, MD
Coordinator: Janet Hanson, RN, BSN
Email: jhanson3@mercydesmoines.org
Website: http://www.mercydesmoines.org/childrenshospital/childrens-reconstructive-surgery

University of Iowa Cleft Palate-Craniofacial Team – CPT, CFT
200 Hawkins Dr
Oto CLINIC-21251 Pfp
Iowa City, IA 52242-1009
Phone: (319) 356-3345
Fax: (319) 356-4547
Patient Age Range: 0-99
Team Leaders: Mark D. Fisher, MD; Deborah Kacmarynski, MD, MS
Coordinator: Deborah J. Strike, BSN
Email: deborah-strike@uiowa.edu
Website: http://www.uihealthcare.org/medical-services/otolaryngology/

 

Trisomy 9
Contact: Barb VanHerreweghe
Phone: (800) 716-SOFT
Email: barbsoft@rochester.rr.com

 

Online Support:
Achondroplasia: LPA District 9
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 Iowa, Iowa Regional Autism Assistance Program
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: Stepping Stones Inc.
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 
Diaphragmatic Hernia: Iowa Cherubs- Congenital Diaphragmatic Hernia Charity
DiGeorge syndrome: Di George Syndrome, 22q11.2 Deletion, Digeorge, VCFS etc
Down syndrome: Down Syndrome Parents of Iowa Advocacy Group, Down Syndrome Association of North West Iowa
Dwarfism: Dwarfism, Little People of the World Organization, LPA District 9
Edwards syndrome: Edwards syndrome (trisomy18), Edwards Syndrome Families & Support – Trisomy 18, Trisomy 18 Foundation Parents Connect
Encephalocele: Encephalocele Parent Support, Encephalocele Support
Epilepsy: Epilepsy Foundation Iowa, Epilepsy Support Group for Iowa
Hydrocephalus: Iowa Pediatric Hydrocephalus Foundation, Inc. 
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: Spina Bifida Association of Iowa
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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