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Information and Resources for Specific Eye Conditions: 

Optic Nerve Hypoplasia (OHN) and Septo-optic Dysplasia (SOD):

1. The Vision Center at Children’s Hospital Los Angeles
www.chla.org/ONH
Under the leadership of ophthalmologist Dr. Mark Borchert, Children’s Hospital Los Angeles is a worldwide leader in the research and management of optic nerve hypoplasia. This website provides FAQs, resources, academic publications, and information on how to participate in research and get in touch with the team.

2. One Small Voice Foundation
www.onesmallvoicefoundation.org
A nonprofit organization dedicated to educating and informing others about ONH and hydrocephalus. OSVF supports research efforts to benefit children with ONH and hydrocephalus.

3. Magic Foundation
www.magicfoundation.org
The Magic Foundation is a national non-profit organization created to provide support services for families of children with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child’s growth. The Magic Foundation has a network of families with children that have ONH/SOD.

4. ONH Consulting
www.onhconsulting.com 
ONH Consulting provides direct and personalized guidance, support and advocacy services to families of children and youth with Optic Nerve Hypoplasia (ONH). The president and founder of ONH Consulting has had a lifetime of experience with several of the unique challenges on ONH.

Retina conditions:

1. Retina Foundation
http://www.retinafoundation.org/
The Retina Foundation is one of the leading independent vision research centers in the United States.  They conduct cutting-edge eye research into the causes and treatments of age-related macular degeneration, infant eye disorders, and inherited retinal eye diseases.

2. Foundation Fighting Blindness
www.FightBlindness.org
The urgent mission of the Foundation Fighting Blindness, Inc. is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa (RP), macular degeneration, Usher Syndrome, and the entire spectrum of retinal degenerative diseases.

Microphthalmia and Anophthalmia:

1. MAPS (Microphthalmia Anophthalmia Parent Support)
www.maparentsupport.com
MAPS provides parent to parent support to families raising children with microphthamia and anophthalmia.

Information

California School for the Blind/Assessment Program
http://www.csb-cde.ca.gov/Documents/assessment.htm

The Assessment Program of the California School for the Blind is a statewide resource offering expertise in the education of children and young adults who are blind, visually impaired and deaf-blind. Our mandate is to provide the following services to California's school districts:

  • Student assessments
  • Parent and staff consultation
  • Professional development for administrators, teachers, specialists and paraprofessionals
TX SenseAbilities
http://www.tsbvi.edu/Outreach/newsletter/index.htm

A Quarterly Newsletter For Families And Professionals On Visual Impairments And Deafblindness.  A collaborative effort of the Texas School for the Blind and Visually Impaired and Department of Assistive and Rehabilitative Services, Division for Blind Services 

Texas School for the Blind
http://www.tsbvi.edu/
The Texas School for the Blind and Visually Impaired (TSBVI) serves as a special public school in the continuum of statewide placements for students who have a visual impairment. It is also a countrywide resource to parents of these children and professionals who serve them.  For information on different eye diseases, technology, curriculum, Braille, evaluation and lots more:

Perkins School for the Blind
http://www.perkins.org/
Resources

The Hadley School for the Blind
http://www.hadley-school.org/

Mission: To promote independent living through lifelong, distance education for people who are blind and visually impaired, their families and blindness service providers

DB-LINK Information Services
http://www.nationaldb.org/ISDefault.php
NCDB is home to DB-LINK, the largest collection of information related to deaf-blindness worldwide. A team of information specialists makes this extensive resource available in response to direct requests, via the NCDB web site, through conferences and a variety of electronic medium.

Everything Braille
http://www.nbp.org/ic/nbp/publications/EB-ABOUT.html
This is a page on the-National Braille Press website that has information about Braille.

Links to games, technology and other information about Braille
http://www.nbp.org/ic/nbp/publications/brailleresource-main.html

Seedlings Braille Books for Children
http://www.seedlings.org/
Seedlings offers Braille books and Books for young children that are in print and braille so that families can read together. They also sell a variety of braille products.

Services

Regional Center Directory
http://www.dds.ca.gov/rc/rclist.cfm Regional centers are nonprofit private corporations that contract with the Department of Developmental Services to provide or coordinate services and supports (delete s) for individuals with developmental disabilities. They have offices throughout California to provide a local resource to help find and access the many services available to individuals and their families.

To locate contact information for the local Regional Center:
http://www.dds.ca.gov/RC/RCList.cfm

For information on eligibility:
http://www.dds.ca.gov/General/Eligibility.cfm  

Financial Assistance

Social Security
http://ssa.gov/pubs/10026.html
The Social Security Administration provides benefits for children with disabilities. A child under 18 can qualify for monthly payments by meeting the administration's definition of disability for children and the eligibility limits of income and resources.

Health Insurance

Medicaid
http://www.cms.hhs.gov/home/medicaid.asp
Medicaid makes it possible for certain low-income individuals and
families to get health care when they could otherwise not afford it. It is available only to certain low-income individuals and families based on federal and state law eligibility.
Medicaid sends payments directly to health care providers.

Medicaid waivers are available for certain individuals who do not meet
the income limits that Medicaid requires. It may cover the expenses
that primary health insurance does not. The following website contains
information on the different Medicaid waiver programs available in
each state.
http://www.cms.hhs.gov/MedicaidStWaivProgDemoPGI/MWDL/list.asp

Toys and other items

Playworks
http://www.playworks.net/

The Teachers' Favorite Toys at Overbrook School for the Blind
http://www.obs.org/page.php?ITEM=23

Blindness Auction Gateway
http://www.blindbargains.com/ebay.php
Use this page to search for all sorts of blindness and low-vision items on EBay.

Early Intervention Products for Young Children with Special Needs
http://www.beyondplay.com/