South Dakota
Suggest a Resource
Achondroplasia
Contact: Shannon Ciardelli
Email: shannon@aspenelectricinc.com
Website: http://www.lpadistrict9.org
Angelman syndrome
Epilepsy Foundation
8301 Professional Place East, Suite 200
Landover, MD 20785-2353
Phone: (800) 322-1000
Email: contactus@efa.org
Website: http://www.epilepsy.com/
South Dakota Speech-Language-Hearing Association
PO Box 308
Sioux Falls, SD 57101-0803
Phone: (605) 274-2423
Website: http://www.sdslha.org/
Special Format Library
South Dakota State Library
MacKay Building
800 Governors Dr.
Pierre, SD 57501
Phone: (605) 773-3131,(800) 423-6665
Email: library@state.sd.us
Website: http://library.sd.gov/BTB/#.WNVxX1XytxA
Autism
Autism Awareness Auberdeen
37902 127th Street
Aberdeen, SD 57401
Phone: (605) 262-1055
Contact:Beth Schmitz-Biegler
Email: schaatz@hotmail.com
Website: http://www.facebook.com/pages/Autism-Awareness-Aberdeen-Wear-Blue-2012/311942402…#sthash.QxQhpfVf.dpuf
Autism Spectrum Disorder Program
Department of Pediatrics
Sanford School of Medicine of The University of South DakotaSioux
Falls, SD 57105
Phone: (605) 357-1439
Email: cd@usd.edu
Website: http://www.usd.edu/cd#sthash.jOYuU8tq.dpuf
LifeScape
2501 W. 26th St.
Sioux Falls, SD 57105
Phone: (605) 444-9500
Email: Info@LifeScapeSD.org
Website: http://www.LifeScapeSD.org#sthash.1WKqZYJ1.dpuf
Support Groups:
Sibshop
3701 W. 49th Street Suite 102
Sioux Falls, SD 57106
Phone: (605) 361-3171, (800) 640-4553
Contact: Barb Beck
Email: sdpc@sdparent.org
South Dakota Parent Connection
Sioux Falls, SD 57106
Phone: (605) 361-3171
Email: sdpc@sdparent.org
Website: http://www.sdparent.org#sthash.O4hap0Om.dpuf
Additional Resources: http://www.autismspeaks.org/resource-guide/state/SD
Blind
Educational Services:
South Dakota Office of Educational Services and Supports
Special Education Programs
800 Governors Drive
Pierre, SD 57501-2291
Phone: (605) 773-3678
Fax: (605) 773-6139
TDD/TTY: (605) 773-6302
Website: http://doe.sd.gov/oess/specialed/index.asp
South Dakota School for the Blind and Visually Impaired
423 17th Avenue SE
Aberdeen, SD 57401-7699
Phone: (605) 626-2580
Fax: (605) 626-2607
Toll-Free: (888) 275-3814
Email: marje.kaiser@sdsbvi.northern.edu
Website: http://sdsbvi.northern.edu/default.htm
NLS Library:
South Dakota Braille and Talking Book Library
State Library Building
800 Governors Drive
Pierre, SD 57501-2294
Phone: (605) 773-3131
Fax: (605) 773-6962
Toll-Free: (800) 423-6665
Email: talkbkreq@state.sd.us
Website: http://library.sd.gov/BTB/index.aspx
Other Agencies:
South Dakota Birth to 3 Connections
800 Governors Drive
Pierre, SD 57501
Phone: (605) 773-3678
Website: http://www.doe.sd.gov/oess/Birthto3.aspx
Cleft Palate and/or Cleft Lip
Sanford Health Cleft Lip and Palate Team – CPT
1310 W 22nd St
Sioux Falls, SD 57105-1501
Phone: (605) 328-8200
Fax: (605) 328-8201
Patient Age Range: 0-18
Team Leader: Patrick D. Munson, MD
Coordinator: Erin Burtis, RN
Email: erin.burtis@sanfordhealth.org
Website: http://www.sanfordhealth.org
Developmental Disabilities
Grant County Arc
906 S. 7th St.
Milbank, SD 57252
Phone: (605) 432-6908
Email: dstewart@tnics.com
Oahe Arc
PO Box 503
Pierre, SD 57501-0503
Phone: (605) 224-4501
Email: cquinn@oaheinc.com
Diaphragmatic Hernia
Contact: Donna Stolz, State Representative
Phone: (612) 709-1238
Email: SouthDakota@cherubs.org
Down syndrome
New Directions Down Syndrome Association
Sioux Falls, SD
Phone: 605-610-8026
Email: info@newdirectionsdsa.com
Website: http://www.newdirectionsdsa.com
Dwarfism
Contact: Shannon Ciardelli
Email: shannon@aspenelectricinc.com
Website: http://www.lpadistrict9.org
Edwards syndrome
Waubay, SD
Phone: (605) 947-4752
Contact: Gloria Jorgenson
Email: Gloriajayne1957@gmail.com
Epilepsy
Epilepsy Foundation
Phone: (301) 459-3700
Toll Free: (800) 332-1000
Intellectual Disabilities
Grant County Arc
906 S. 7th St.
Milbank, SD 57252
Phone: (605) 432-6908
Email: dstewart@tnics.com
Oahe Arc
PO Box 503
Pierre, SD 57501-0503
Phone: (605) 224-4501
Email: cquinn@oaheinc.com
Patau syndrome
Waubay, SD
Phone: (605) 947-4752
Contact: Gloria Jorgenson
Website: Gloriajayne1957@gmail.com
Pierre Robin Sequence
Sanford Health Cleft Lip and Palate Team – CPT
1310 W 22nd St
Sioux Falls, SD 57105-1501
Phone: (605) 328-8200
Fax: (605) 328-8201
Patient Age Range: 0-18
Team Leader: Patrick D. Munson, MD
Coordinator: Erin Burtis, RN
Email: erin.burtis@sanfordhealth.org
Website: http://www.sanfordhealth.org
Prader-Willi syndrome
Phone: (800) 926-4797
Email: chapters@pwsausa.org
Tessier Cleft
Sanford Health Cleft Lip and Palate Team – CPT
1310 W 22nd St
Sioux Falls, SD 57105-1501
Phone: (605) 328-8200
Fax: (605) 328-8201
Patient Age Range: 0-18
Team Leader: Patrick D. Munson, MD
Coordinator: Erin Burtis, RN
Email: erin.burtis@sanfordhealth.org
Website: http://www.sanfordhealth.org
Trisomy 9
Waubay, SD
Phone: (605) 947-4752
Contact: Gloria Jorgenson
Email: Gloriajayne1957@gmail.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: SPD, ADHD, Autism etc. Parents In South Dakota, Autism Support Group of Central South Dakota
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: Cerebral Palsy Awareness
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: South Dakota Cherubs- Congenital 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:Hydrocephalus Association
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 the Intermountain Region
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