Alaska

Suggest a Resource

Achondroplasia
Contact: Kathy Snyder
Email: athleenasnyder@gmail.com
Website: http://www.lpadistrict11.or

 

Angelman syndrome
Alaska Speech-Language-Hearing Association
PO Box 111993
Anchorage, AK, 99511
Phone: (907) 212-0211
Email: aksha907@gmail.com
Website: http://www.aksha.org/

Family to Family Health Information Center
Stone Soup Group
307 E. Northern Lights Blvd, Suite 100
Anchorage, AK, 99503
Phone: (907) 561-3701
Toll-Free: (887) 786-7327
Email: info@stonesoupgroup.org
Website: http://www.stonesoupgroup.org

 

Autism
Alaska Autism Resource Center
3501 Denali Street Suite 101
Anchorage, AK 99503
Phone: (907) 334-1300
Email: aarc@sesa.org
Website: http://www.alaskaarc.org

Autism Society of America
1002 D Street
Fairbanks, AK 99701
Phone: (907) 374-4421
Contact: Heidi Hass, President
Email: ak-goldenheart@autismsocietyofamerica.org

Stone Soup Group
307 E. Northern Lights Boulevard Suite 100
Anchorage, AK 99503
Phone: (
907) 561-3701, (877) 786-7327
Contact: Annette Blanas
Email: ssg@stonesoupgroup.org
Website: http://www.stonesoupgroup.org

Support Groups:
Alaska Youth & Family Network
AYFN’s Offices are located throughout the state.
AK
Phone: (888) 770-4979
Website: http://www.ayfn.org

Hope Community Resources
540 W. International Airport Rd.
Anchorage, AK 99518
Phone: (907) 561-5335
Website: http://www.hopealaska.org

Easter Seals Alaska
670 Fireweed Lane Suite 105
Anchorage, AK 99503
Phone: (907) 277-7325
Website: http://www.alaska.easterseals.com

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

 

Blind
Educational Services:
Alaska Department of Education and Early Development
801 West Tenth Street, Suite 200
Juneau, AK 99801-1894
Phone:(907) 465-2972
Fax:(907) 465-3396
Email: eed.webmaster@alaska.gov
Website: http://education.alaska.gov/tls/sped/

Alaska Early Intervention/Infant Learning Program
Department of Health and Social Services
Division of Senior and Disabilities Services
751 Old Richardson Highway, Suite 100A
Fairbanks, AK 99701
Phone: (907) 451-5041
Toll-Free: (800) 770-1672
Website: http://dhss.alaska.gov/dsds/Pages/infantlearning/default.aspx

Special Education Service Agency
3501 Denali Street
Suite 1
Anchorage, AK 99503
Phone: (907) 334-1300
Fax: (907) 562-0545
TDD/TTY: (907) 563-8284
Email: sesa@sesa.org
Website: http://www.sesa.org

Stone Soup Group (SSG)
307 E. Northern Lights Blvd.
Suite 100
Anchorage, AK 99503
Phone: (907) 561-3701
Toll-Free(877) 786-7327
Email: info@stonesoupgroup.org
Website: http://www.stonesoupgroup.org/

NLS Library:
Alaska State Library Talking Book Center
395 Whittier Street
Juneau, AK 99801
Toll-Free: (888) 820-4525
Email: tbc@alaska.gov
Website: http://talkingbooks.alaska.gov/

Alaska Center for the Blind and Visually Impaired
3903 Taft Drive
Anchorage, AK 99517-3069
Phone: (907) 248-7770
Fax: (907) 248-7517
Toll-Free: (800) 770-7517
Email: info@alaskabvi.org
Website: http://www.alaskabvi.org

Developmental Disabilities
The Arc of Anchorage
2211 Arca Drive
Anchorage, AK 99508-3462
Phone: (907) 277-6677
Email: info@thearcofanchorage.org
Website: http://www.thearcofanchorage.org/

 

DiGeorge syndrome
Parent Contact: Crystal Diaz
Website: alaskasweetpea83@gmail.com

 

Down syndrome
Alaska Chapter NDSC
Anchorage, AK
Phone: (907) 667-6677
Website: http://www.akdownsyndrome.org

 

Dwarfism
Contact: Kathy Snyder
Email: athleenasnyder@gmail.com
Website: http://www.lpadistrict11.org/

 

Edwards Syndrome
Contact: Barb VanHerreweghe
Phone: 1-800-716-SOFT
Email: barbsoft@rochester.rr.com

 

Epilepsy
Epilepsy Foundation Northwest
2311 N 45th St #134
Seattle, Washington 98103-6905
United States
Phone: (206) 547-4551
Toll Free: (800) 752-3509

 

Hydrocephalus
Contact: Kendra Chavez
Email: anchoragecommunity@hydroassoc.org

 

Intellectual Disabilities
The Arc of Anchorage
2211 Arca Drive
Anchorage, AK 99508-3462
Phone: (907) 277-6677
Email: info@thearcofanchorage.org
Website: http://www.thearcofanchorage.org/

 

Patau syndrome
Contact: Barb VanHerreweghe
Phone: 1-800-716-SOFT
Email: barbsoft@rochester.rr.com

 

Prader-Willi syndrome
Alaska Chapter PWSA
Alaska
Contact: Lindsay Smith, Chapter Leader
Phone: (907) 351-6291
Email: llsmith.pwsak@gmail.com

 

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

 

Online Support:
Achondroplasia: LPA District 11
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: South East Alaska Autism and Other Disorders Support Group
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:Alaska Cerebral Palsy Network
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: Alaska Cherubs-Congenital Diaphragmatic Hernia Charity
DiGeorge syndrome: DiGeorge Syndrome, 22q11.2 Deletion, DiGeorge, VCFS etc
Down syndrome: Alaska Down Syndrome Congress
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 Awareness of Alaska Support Group
Hydrocephalus: State of Alaska 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: Spina Bifida Association 
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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