New Web Community Brings Together Parents of Visually Impaired Children
New York, NY, April 29, 2008—When parents learn their child has a visual impairment, it can be overwhelming. Parents wonder, "Will my child fall behind at school?" or "Will my child make friends?" or "Will my child have a successful career?" With only 93,600 visually impaired school-aged children in the U.S., over half of whom have additional disabilities, it's easy for families facing vision loss to feel alone.
To help these families connect with each other and give busy parents, grandparents and other caretakers a place to find comprehensive resources and support 24 hours a day, the American Foundation for the Blind (AFB) and the National Association for Parents of Children with Visual Impairments (NAPVI) today launched FamilyConnect™, an online, multimedia community for parents and guardians of children with visual impairments.
Located at www.familyconnect.org, FamilyConnect gives parents access to message boards where they can talk to other parents, compelling videos featuring real-life families, parenting articles, a mom-authored blog, a glossary of more than 30 eye conditions, and links to local resources. The site also features sections dedicated to multiple disabilities, technology, education, and every age group from infants to teens.
"We created FamilyConnect to give parents the support and information they need to ensure their children can achieve their dreams—whether that is playing sports or music, learning to read braille, getting a first job, surfing the web, making the cheerleading squad, traveling the world, or going to graduate school," said Carl R. Augusto, President & CEO of AFB.
A recent NAPVI/AFB survey of parents of children with visual impairments showed that parents/guardians turn most commonly to physicians (82%), educators (76%), and web sites (65%) for information and support regarding their children's vision problems. This is consistent with national statistics from the 2006 Pew Internet & American Life Project that show 80 percent of American adult Internet users have searched for health information online. For parents living in rural areas with fewer resources, the web is particularly important to finding relevant, trustworthy information and the right services.
"When I talk to parents of visually impaired children, they almost always ask about three things: they want to talk to other parents who have children with the same eye condition as their child, they want access to the latest health and education information, and they want to know what the future holds," said Susan LaVenture, Executive Director of NAPVI. "FamilyConnect offers parents all these things—and more—in one place."
In addition to joining a community of parents, visitors to www.familyconnect.org can create a personal profile and receive information on news and events based on their child's age, eye condition, and location. Families can also find articles written by parents and professionals on topics such as:
- Finding the Right Eye Care Professionals for Your Child
- Developmental Milestones: What Do They Mean?
- Your Child's Individualized Educational Program
- Friendship in the Teen Years
- College Life Begins
In designing this web site, AFB and NAPVI partnered with leading national organizations and hundreds of local agencies that serve children who are visually impaired to keep FamilyConnect content complete and up to date. AFB and NAPVI also solicited input from families across the country. Here are representative samples of what they are saying about the final result.
Jen and Bill O'Neill, Nebraska
Daughter Camille, age 3, Retinopathy of Prematurity (ROP)
"Our family is truly amazed at what we've seen of the site. Wow! Thank you all for the insight to see that this is something that is so needed for families who are facing and overcoming the diagnosis of visual impairment. The site is more than I imagined it would be—it is so comprehensive and truly allows families to connect with one another and to resources."
Patty Bushland, Arkansas
Daughter Mary Rose, age 2, Leber's Congenital Amaurosis (LCA)
"When I found out my baby was visually impaired, I immediately went to the Internet to find out everything I could about her condition and what I could do to help her. FamilyConnect is so important, and I wish it had been there for me when my daughter was first diagnosed."
The goal of www.familyconnect.org is to provide connections and support. By providing accurate information and creating a forum for meaningful discussion, families and their visually impaired children will feel empowered to reach their full potential.
FamilyConnect is generously supported by grants from the Lavelle Fund for the Blind, Inc. and Conrad N. Hilton Foundation, The Annie E. Casey Foundation, and Morgan Stanley.
The American Foundation for the Blind (AFB) is a national nonprofit that expands possibilities for people with vision loss. AFB's priorities include broadening access to technology; elevating the quality of information and tools for the professionals who serve people with vision loss; and promoting independent and healthy living for people with vision loss by providing them and their families with relevant and timely resources. Headquartered in New York, AFB is proud to house the Helen Keller Archives and honor the more than forty years that Helen Keller worked tirelessly with AFB.
The National Association for Parents of Children with Visual Impairments (NAPVI) is an international membership organization serving families in the U.S. and in 55 countries. NAPVI helps parents to find information and resources for their children who are blind or visually impaired, including those with additional disabilities. NAPVI provides leadership, support, and education to assist parents in helping children reach their potential.
For more information, contact:
Tel: (212) 502-7675