FamilyConnectFamilyConnect

A Web Site for Parents of A Web Site for Parents of Children with Visual Children with Visual ImpairmentsImpairments

Partnering for ParentsPartnering for Parents

•American Foundation for the Blind American Foundation for the Blind (AFB)—a national nonprofit devoted (AFB)—a national nonprofit devoted to expanding possibilities for people to expanding possibilities for people with vision losswith vision loss

•National Association for Parents of National Association for Parents of Children with Visual Impairments Children with Visual Impairments (NAPVI)—an international (NAPVI)—an international membership organization serving membership organization serving families in the US and in 55 countriesfamilies in the US and in 55 countries

Shared GoalsShared Goals•Inspire hope and allay fearsInspire hope and allay fears•Reduce isolation by networking parents Reduce isolation by networking parents

with other parentswith other parents•Raise parents’ expectations for their childRaise parents’ expectations for their child•Connect parents with Connect parents with

professional support professional support and servicesand services

•Encourage/support parent Encourage/support parent advocacy at the national advocacy at the national and local leveland local level

A meeting place to talk A meeting place to talk with other parents who with other parents who share their concernsshare their concerns

““WWhat a relief to hat a relief to know you’re not alone.”know you’re not alone.”

““I feel like I could be a I feel like I could be a resource for other resource for other parents.”parents.”

What Parents WantWhat Parents Want

What Parents WantWhat Parents Want•Emotional support Emotional support and encouragement and encouragement to help them copeto help them cope

““I felt like my whole I felt like my whole world world fell apart.”fell apart.”

““I thought it was my I thought it was my fault that my baby fault that my baby was blind.”was blind.”

What Parents WantWhat Parents Want•A centralA centralresource with reliable, resource with reliable, comprehensive comprehensive informationinformation

““There is a lot of information There is a lot of information on the web, but it’s on the web, but it’s scattered and you don’t scattered and you don’t know what you can trust.”know what you can trust.”

What Parents WantWhat Parents Want•Customized information based on Customized information based on their child’s age and eye conditiontheir child’s age and eye condition

•Information about targeted events Information about targeted events and content sent to them proactively and content sent to them proactively via email and newslettersvia email and newsletters

““There are so many websites out there…You There are so many websites out there…You spend so much time sorting through it all.”spend so much time sorting through it all.”

What FamilyConnect What FamilyConnect OffersOffers

Community support and connection Community support and connection to other parentsto other parents– Parent perspectives and family Parent perspectives and family

storiesstories– Inspirational video profiles of Inspirational video profiles of

parents and children parents and children – Message boards, forums, blog Message boards, forums, blog

moderated by NAPVImoderated by NAPVI

What FamilyConnect OffersWhat FamilyConnect Offers

•Reliable, comprehensive information Reliable, comprehensive information in one central resourcein one central resource– Expert advice on raising a child with Expert advice on raising a child with

vision impairment, organized by agevision impairment, organized by age– Community spaces centered around Community spaces centered around

specific eye conditionsspecific eye conditions– Searchable database of 800 agencies Searchable database of 800 agencies

providing services/activities for parents providing services/activities for parents and childrenand children

What FamilyConnect OffersWhat FamilyConnect Offers

•Customized contentCustomized contentEmail alerts and newsletters sent based Email alerts and newsletters sent based

onon– Child’s ageChild’s age– Child’s eye conditionChild’s eye condition– Parents’ interestsParents’ interests– Family’s locationFamily’s location

FamilyConnect FamilyConnect MembersMembers

Parents who join FamilyConnect Parents who join FamilyConnect can:can:– Receive customized email alerts and Receive customized email alerts and

newslettersnewsletters– Post and respond to message boardsPost and respond to message boards– Contribute personal stories and Contribute personal stories and

parent perspectives for publicationparent perspectives for publication

FamilyConnect VisionFamilyConnect Vision•A lifelong support system for parents A lifelong support system for parents of children with visual impairments of children with visual impairments

•Dynamic social network with content Dynamic social network with content created by parentscreated by parents

•Expert, customized informationExpert, customized information

FamilyConnect VisionFamilyConnect Vision

•Direct connections to Direct connections to local and state services, local and state services, activities, and eventsactivities, and events

•A pathway to adult A pathway to adult lifeline areas on afb.org lifeline areas on afb.org (CareerConnect®, (CareerConnect®, Living with Vision Loss, Living with Vision Loss, AccessWorld®) and AccessWorld®) and other web resourcesother web resources

FamilyConnectFamilyConnect

• Families are connecting with each Families are connecting with each other from across the USA and other from across the USA and indeed the globeindeed the globe

• Currently use Message BoardsCurrently use Message Boards• Directory of AgenciesDirectory of Agencies• Calendar of EventsCalendar of Events• Coming soon—Social NetworkingComing soon—Social Networking

Current Message BoardsCurrent Message Boards• After the Diagnosis - After the Diagnosis - • Leber's Congenital Amaurosis Leber's Congenital Amaurosis

Forum Forum • Optic Nerve Hypoplasia Forum Optic Nerve Hypoplasia Forum

(also known as Septo-Optic (also known as Septo-Optic Dysplasia and De Morsier's Dysplasia and De Morsier's Syndrome) Syndrome)

• Glaucoma Forum Glaucoma Forum • Deaf-Blindness Forum Deaf-Blindness Forum • Achromatopsia Forum Achromatopsia Forum • Anophthalmia Forum Anophthalmia Forum • Aniridia Forum Aniridia Forum • Autism Spectrum Disorders Autism Spectrum Disorders

Forum Forum • Norrie Disease ForumNorrie Disease Forum• Uveitis Forum Uveitis Forum • Juvenile Retinoschisis Forum Juvenile Retinoschisis Forum

Cataracts Forum Familial Cataracts Forum Familial Exudative Vitreoretinopathy Exudative Vitreoretinopathy (FEVR) Forum (FEVR) Forum

• Hot Topics Forum Hot Topics Forum • CorticalVisual Impairment Forum CorticalVisual Impairment Forum

• Parents of Infants and Toddlers Parents of Infants and Toddlers Forum Forum

• Parents of Preschoolers Forum Parents of Preschoolers Forum • Parents of Grade Schoolers Forum Parents of Grade Schoolers Forum • Parents of Teenagers Forum Parents of Teenagers Forum • Education Forum Education Forum • Technology Forum Technology Forum • Albinism Forum Albinism Forum • Coloboma Forum Coloboma Forum • De Morsier's Syndrome Forum De Morsier's Syndrome Forum • Laurence-Moon-Bardet-Biedl Laurence-Moon-Bardet-Biedl

Syndrome Forum Syndrome Forum • Low Vision Forum Low Vision Forum • Macular Degeneration Forum Macular Degeneration Forum • Marfan Syndrome Forum Marfan Syndrome Forum • Microphthalmia Forum Microphthalmia Forum • Nystagmus Forum Nystagmus Forum • Optic Nerve Atrophy Forum Optic Nerve Atrophy Forum • Retinitis Pigmentosa Forum. Retinitis Pigmentosa Forum. • Retinoblastoma Forum Retinoblastoma Forum • Stargardt's Disease ForumStargardt's Disease Forum

Users and AgenciesUsers and Agencies

1.1. Registered users may receive Registered users may receive customizable email alerts—postings, customizable email alerts—postings, eventsevents

2.2. Professionals and Friends are welcomeProfessionals and Friends are welcome

3.3. Agencies are urged to keep their directory Agencies are urged to keep their directory profile up to date so families can find themprofile up to date so families can find them

4.4. Use the calendar of events as a free Use the calendar of events as a free marketing and outreach tool and get your marketing and outreach tool and get your message out on the email alertsmessage out on the email alerts

5.5. AFB will help you to maximize your use of AFB will help you to maximize your use of the FamilyConnect sitethe FamilyConnect site

Social NetworkingSocial NetworkingFamilies will be able to find Families will be able to find

each other by:each other by:

1.1. based on eye conditionbased on eye condition

2.2. based on locationbased on location

3.3. based on agebased on age

4.4. Future may bring even more Future may bring even more optionsoptions

Families Profiles willFamilies Profiles will

• Include location and contact Include location and contact informationinformation

• Have a current status section that Have a current status section that can be very short or very longcan be very short or very long

• Families can comment on the Families can comment on the messages status of their friendsmessages status of their friends

• Be able to post picturesBe able to post pictures

Family WillFamily Will

1.1. Have total control over what Have total control over what information is viewed and sharedinformation is viewed and shared

2.2. Have total control over who can Have total control over who can find themfind them

3.3. Will be able to opt outWill be able to opt out

4.4. Receive email alerts when their Receive email alerts when their friends have postedfriends have posted

American American Foundation for the Foundation for the

BlindBlindScott TruaxScott Truax

Program ManagerProgram ManagerCareerConnectCareerConnectFamilyConnectFamilyConnect

struax@afb.netstruax@afb.netwww.afb.orgwww.afb.org