[nfbwatlk] Fw: Fw: [leadership] AFB/NAPVI FamilyConnect
Mary Ellen
gabias at telus.net
Thu May 1 00:35:58 CDT 2008
I notice the word "blind" is used very sparingly. Vision loss and visual
impairment seem to have replaced the word blind as adjectives to describe
us. I realize that people who are new to the concept often shy away from the
word blind. I'm not suggesting that we be inflexible and insist that blind
be used in all circumstances. Sometimes it takes a little time for parents
to develop positive associations with the word blind. However, I don't
believe in wholesale surrender to politically popular euphemisms which
transmit disrespect of blindness.
I noticed I used the word blind in almost every sentence. Perhaps I did so
as an antedote to euphemism twoddle.
Mary Ellen
-----Original Message-----
From: nfbwatlk-bounces+gabias=telus.net at nfbnet.org
[mailto:nfbwatlk-bounces+gabias=telus.net at nfbnet.org] On Behalf Of Mike
Freeman
Sent: April 30, 2008 8:30 PM
To: NFB of Washington Talk Mailing List
Subject: Re: [nfbwatlk] Fw: Fw: [leadership] AFB/NAPVI FamilyConnect
I dare say there are few members of NFB who trust NAPVI.
Mike
----- Original Message -----
From: Carl Jarvis
To: NFB of Washington Talk Mailing List
Sent: Wednesday, April 30, 2008 7:30 PM
Subject: Re: [nfbwatlk] Fw: Fw: [leadership] AFB/NAPVI FamilyConnect
Hi Mike,
I must be missing something. Why does this article show AFB
regressing?
And what are their true colors?
Thanks.
Carl Jarvis
----- Original Message -----
From: "Mike Freeman" <k7uij at panix.com>
To: "NFB of Washington Talk" <nfbwatlk at nfbnet.org>
Sent: Wednesday, April 30, 2008 7:15 PM
Subject: [nfbwatlk] Fw: Fw: [leadership] AFB/NAPVI FamilyConnect
> It would appear that the American Foundation for the Blind (AFB) is
> regressing or perhaps is showing its true colors.
>
> Read on.
>
> Mike Freeman
>
> ----- Original Message -----
> From: Sue Ammeter
> To: wcb-l at wcbinfo.org
> Sent: Wednesday, April 30, 2008 6:20 AM
> Subject: [Wcb-l] Fw: [leadership] AFB/NAPVI FamilyConnect
>
>
>
> ----- Original Message -----
> From: "Jeff Thom" <jsthom at comcast.net>
> Sent: Tuesday, April 29, 2008 8:56 PM
> Subject: [leadership] AFB/NAPVI FamilyConnect
>
>
> This AFB/NAPVI partnership, as discussed in the press release
included
> below, is a major step forward for families with children who have
> visual
> impairments. As a board member of the American Foundation for the
Blind,
> I
> can tell you that it is their hope that all ACB affiliates will play
a
> part
> in this venture, and as CCB president, I urge all affiliates to
learn as
> much as they can and become involved.
>
> Jeff Thom
>
>
>
>
>
> FOR IMMEDIATE RELEASE
>
> Contact: Adrianna Montague-Gray
>
> AFB Communications
>
> (212) 502-7675
>
> amontaguegray at afb.net
>
>
>
> 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 FamilyConnectTM, an online, multimedia
community
> for
> parents an d 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:
>
>
>
> a.. Finding the Right Eye Care Professionals for Your Child
> b.. Developmental Milestones: What Do They Mean?
> c.. Your Child's Individualized Educational Program
> d.. Friendship in the Teen Years
> e.. 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.
>
>
>
> # # #
>
> About AFB
>
> 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.
>
>
>
> About NAPVI
>
> 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.
>
>
>
> _______________________________________________
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