Iowa
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 Connect, Blind 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