Spina Bifida Association of America
32nd Annual Conference
Building Bridges to Advance Understanding
June 26 – 29, 2005
Minneapolis, Minnesota
******************************************************

We’re already getting a lot of questions already about
the Annual Conference—so we have posted the latest
information about the Conference at
http://www.sbaa.org/site/PageServer?pagename=sbaa_conference_2005.
  There is information about the hotels, the rates and
some tips for raising money to help support your trip
to the Conference.

With regards to room reservations, the Hyatt is
keeping a waiting list of ADA rooms, which will be
filled if available.  They are also adapting several
rooms which people can ask for now.  In addition,
there are ADA rooms in the Millennium.

See you in June!

-Adriane

Adriane K. Griffen, MPH, CHES
Director, Public Health Programs
Spina Bifida Association of America
4590 MacArthur Blvd., NW, Suite 250
Washington, DC 20007-4226
Phone:  (202) 944-3285, x 13
Fax: (202) 944-3295
Email: agriffen@...






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The SBANC Conference that was tentatively scheduled for Oct. 9 has
been postponed.

We apologize for any inconvenience you may have experienced because
of this change.

A co-sponsored event with Victory Junction is being planned for
February. Additional information will be posted here and at
www.sbanc.org when details are available.

**SURVEY EXTENDED ONE MORE WEEK**

HAVE YOU TAKEN THE SURVEY YET?

  SPINA BIFIDA COMMUNITY SURVEY
  www.sbaa.org or http://66.34.105.118
  Take the survey in September!

  During the month of September, SBAA is conducting
  its biannual national survey of adults and families
  living with spina bifida and the caregivers and
health care providers who touch their lives.   Please
take a few minutes to fill out this survey at
www.sbaa.org. The survey will help us develop programs
for you. All responses will remain confidential. Thank
you!

  ENCUESTA DE SPINA BIFIDA
  www.sbaa.org  O  http://66.34.105.118
  ¡Completar esta encuesta en septiembre!

  Esta es una encuesta a nivel nacional para adultos y
  familias que viven con la condición de espina bífida,
  y para los proveedores de cuidado y servicios médicos
  que forman parte de sus vidas. Por favor tome unos
  breves minutos para completar esta encuesta para la
  Asociación de Espina Bífida de América,www.sbaa.org,
  la cual nos ayudará a desarrollar una variedad de
programas para usted. Sus respuestas serán
confidenciales. ¡Gracias!





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ONLY ONE WEEK LEFT!
HAVE YOU TAKEN THE SURVEY YET?

  SPINA BIFIDA COMMUNITY SURVEY
  www.sbaa.org or http://66.34.105.118
  Take the survey in September!

  During the month of September, SBAA is conducting
  its
  biannual national survey of adults and families
  living
  with spina bifida and the caregivers and health care
  providers who touch their lives.   Please take a few
  minutes to fill out this survey at www.sbaa.org.
  The survey will help us develop programs for you. All
  responses will remain confidential. Thank you!

  ENCUESTA DE SPINA BIFIDA
  www.sbaa.org  O  http://66.34.105.118
  ¡Completar esta encuesta en septiembre!

  Esta es una encuesta a nivel nacional para adultos y
  familias que viven con la condición de espina bífida,
  y para los proveedores de cuidado y servicios médicos
  que forman parte de sus vidas. Por favor tome unos
  breves minutos para completar esta encuesta para la
  Asociación de Espina Bífida de América,www.sbaa.org,
  la cual nos ayudará a desarrollar una variedad de
programas para usted. Sus respuestas serán
confidenciales. ¡Gracias!




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Thanks for the information!


[Non-text portions of this message have been removed]

I work in Career Services at Pfeiffer University and occasionally
receive information that might be useful to some of the SBANC membership.
Please disregard if this doesn't pertain to you.
Thanks.
Sarah Moore Brookshire
Director, Career Services, Pfeiffer University
Board member, SBANC

-------- Original Message --------
Subject:  CAREER EXPO FOR DISABLED, DC, NOV.12
Date:  Tue, 14 Sep 2004 09:39:32 -0400
From:  John R Miller <jmiller@...>
To:  Brookshire, Sarah <smoore@...>



Dear Sarah Brookshire:

DATE: SEPTEMBER 14, 2004

TO: ALL CAREER PLACEMENT OFFICERS, AHEAD COUNCELORS, JOB AND
       CAREER COUNSELORS, AND ALL ASSOCIATIONS AND SOCIETIES THAT
       WORK WITH PEOPLE WITH DISABILITIES.

FROM: JOHN MILLER, PUBLISHER, CAREERS & The disABLED Magazine

SUBJECT: THE FALL 2004 CAREER EXPO FOR HIRING ENTRY-LEVEL AND
                    PROFESSIONAL PEOPLE WITH DISABILITIES TAKING PLACE
                    NOVEMBER 12TH, 2004 AT THE MARRIOTT WARDMAN PARK
                    HOTEL, WASHINGTON, D.C.

DEAR CAREER PLACEMENT COUNSELORS FOR PEOPLE WITH DISABILITIES:

THE FALL, 2004 CAREER EXPO FOR PEOPLE WITH DISABILITIES TAKES PLACE ON
NOVEMBER 12TH AT THE MARRIOTT WARDMAN PARK HOTEL IN WASHINGTON, D.C.

THE CAREER EXPO, HOSTED BY THE NATION'S LEADING CAREER MAGAZINE FOR PEOPLE
WITH DISABILITIES, CAREERS & THE disABLED, IS SPONSORED BY THE GALAUDET
UNIVERSITY CAREER CENTER, THE ASSOCIATION OF HIGHER EDUCATION AND
DISABILITY, AND THE D.C. MAYOR'S OFFICE FOR PEOPLE WITH DISABILITIES.

I AM ATTACHING A POSTER PROMOTING THE CAREER EXPO FOR PEOPLE WITH
DISABILITIES, AND WE HOPE YOU WILL PRINT IT OUT AND POST IT ON YOUR JOB AND
INFORMATION BOARDS AS WELL AS EMAIL YOUR COLLEGE STUDENTS, ALUMNI, AND JOB
SEEKERS ABOUT THIS SPECIAL CAREER EVENT ON NOVEMBER 12TH.

AS BEFORE, WE WOULD LIKE TO ASK FOR YOUR HELP IN ENCOURAGING ALL OF YOUR JOB
SEEKERS TO POST THEIR RESUME ONLINE BY PRE-REGISTERING AT
WWW.EOP.COM/EXPOREGISTRATIONDC.HTML. PLEASE ALSO TELL THEM THAT ALL
PRE-REGISTERED JOB CANDIDATES WITH DISABILITIES WHO ATTACH THEIR RESUME,
WILL HAVE THAT RESUME PUT ON A CD DISK THAT WILL BE GIVEN TO ALL RECRUITERS
AT THE CAREER EXPO. PRE-REGISTERING WILL ALSO HELP THEM GET INTO THE
CAREER EXPO MUCH FASTER THAN THOSE WHO DO NOT PRE-REGISTER.

COMPANIES AND GOVERNMENT AGENCIES THAT WILL BE RECRUITING PEOPLE WITH
DISABILITIES ARE SIGNING UP IN RECORD NUMBERS. HERE ARE A FEW OF THEM:

     AT&T- BRONZE SPONSOR, TOYOTA- REGISTRATION BAG SPONSORS,
     WAL-MART, U.S. POSTAL SERVICE, CENTERS FOR MEDICARE AND
     MEDICAID, FBI, NATIONAL HEART, LUNG AND BLOOD INSTITUTE,
     RAYTHEON- SILVER SPONSOR, ASTRA ZENICA, LOCKHEED MARTIN, U.S.
     DEPARTMENT OF JUSTICE, U.S. COAST GUARD, SOCIAL SECURITY
     ADMINISTRATION, NATIONAL GEOSPATIAL INTELLIGENCE AGENCY,
     BOOZ ALLEN HAMILTON, NUCLEAR REGULATORY COMISSION, DEFENSE
     LOGISTICS AGENCY, NAVAIR, NATIONAL SECURITY AGENCY, U.S. ARMY
     CECOM, FANNIE MAE, ARLINGTON COUNTY GOVERNMENT, AND NAVAL
     SURFACE WARE. A.A.R.P, U.S.D.A. FOREST SERVICE, U.S. DEPARTMENT OF
     DEFENSE, U.S. DEPARTMENT OF STATE, U.S. DEPARTMENT OF ENERGY,
     INTERNAL REVENUE SERVICE, AND THE U.S. SECRET SERVICE, AND
     UNITED STATES BUREAU OF ENGRAVING AND PRINTING, VETERANS
     ADMINISTRATION, DEFENSE INTELLIGENCE AGENCY, U.S. DEPARTMENT
     OF LABOR, NATIONAL INSTITUTES OF HEALTH-DEPT. OF EO AND
     DIVERSITY, DEPT. OF HOMELAND SECURITY-ADNET SYSTEMS, US PATENT
     AND TRADEMARK, FREDDIE MAC, US IMMIGRATIONS & CUSTOMS,
     DEFENSE THREAT REDUCTION AGENCY, FARM CREDIT ADMINISTRATION,
     LIBRARY OF CONGRESS, U.S. COMPTROLLER OF THE CURRENCY, AND
     THE FEDERAL AVIATION ADMINISTRATION.

WE ARE ALREADY STARTING TO RECEIVE PRE-REGISTERED JOB CANDIDATES AND HERE IS
OUR FIRST REPORT ON THEIR ACTIVITY BY SCHOOL, BY ASSOCIATION, SOCIETY, AND
JOB COUNSELING SERVICE:

     Boston Univ. School of Law..........1
     Calvin College...........................1
     Clark University.........................1
     Indiana State University................1
     Joint Military Intelligence College...1
     New York Institute of Technology...1
     Ramapo College........................1
     Rochester Instit. Of Tech.-NTID.....1
     Rutgers University.....................1
     State Univ. of N.Y., New Paltz.......1
     Univ. of Maryland, Univ.College....1
     Univ. of Minnesota, Morris...........1
     Univ. of South Carolina...............1
     Non college job applicants............6

Total pre-registered job applicants as of 9/13/2004: 19

WE THANK YOU AGAIN FOR YOUR HELP FOR LAST YEAR'S CAREER EXPO IN WASHINGTON
D.C. THAT TOOK PLACE AT THE NEW CONVENTION CENTER. WE HAD OVER 1100 JOB
CANDIDATES WITH DISABILITIES ATTEND THE EVENT LAST YEAR, AND WE LOOK FORWARD
TO WORKING WITH YOU FOR THIS YEAR'S EVENT WHICH WE EXPECT WILL HAVE A RECORD
TURNOUT.

WARMEST REGARDS,

JOHN MILLER
PUBLISHER, CAREERS & THE disABLED MAGAZINE
631-421-9421, EXT. 20
E-MAIL: JMILLER@...
WEBSITE:WWW.EOP.COM






[Non-text portions of this message have been removed]

I took it!

Thanks, Adriane!

Mike


--- Adriane Griffen <akgriffen@...> wrote:

> HAVE YOU TAKEN THE SURVEY YET?
>
> SPINA BIFIDA COMMUNITY SURVEY
> www.sbaa.org or http://66.34.105.118
> Take the survey in September!
>
> During the month of September, SBAA is conducting its
> biannual national survey of adults and families living
> with spina bifida and the caregivers and health care
> providers who touch their lives.   Please take a few
> minutes to fill out this survey at www.sbaa.org.  The
> survey will help us develop programs for you. All
> responses will remain confidential. Thank you!
>
> ENCUESTA DE SPINA BIFIDA
> www.sbaa.org  O  http://66.34.105.118
> ¡Completar esta encuesta en septiembre!
>
> Esta es una encuesta a nivel nacional para adultos y
> familias que viven con la condición de espina bífida,
> y para los proveedores de cuidado y servicios médicos
> que forman parte de sus vidas. Por favor tome unos
> breves minutos para completar esta encuesta para la
> Asociación de Espina Bífida de América, www.sbaa.org,
> la cual nos ayudará a desarrollar una variedad de
> programas para usted. Sus respuestas serán
> confidenciales. ¡Gracias!
>
>
>
>
> __________________________________
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=====

Michael H. Gates

Gatekeeper Group, Inc. http://www.gatekeepergroupinc.com/pr

"Faithful messengers are as refreshing as snow in the heat of summer. They
revive the spirit of their employer." -- Prov. 25:13 (NLT)





__________________________________________________
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HAVE YOU TAKEN THE SURVEY YET?

SPINA BIFIDA COMMUNITY SURVEY
www.sbaa.org or http://66.34.105.118
Take the survey in September!

During the month of September, SBAA is conducting its
biannual national survey of adults and families living
with spina bifida and the caregivers and health care
providers who touch their lives.   Please take a few
minutes to fill out this survey at www.sbaa.org.  The
survey will help us develop programs for you. All
responses will remain confidential. Thank you!

ENCUESTA DE SPINA BIFIDA
www.sbaa.org  O  http://66.34.105.118
¡Completar esta encuesta en septiembre!

Esta es una encuesta a nivel nacional para adultos y
familias que viven con la condición de espina bífida,
y para los proveedores de cuidado y servicios médicos
que forman parte de sus vidas. Por favor tome unos
breves minutos para completar esta encuesta para la
Asociación de Espina Bífida de América, www.sbaa.org,
la cual nos ayudará a desarrollar una variedad de
programas para usted. Sus respuestas serán
confidenciales. ¡Gracias!




__________________________________
Do you Yahoo!?
Yahoo! Mail Address AutoComplete - You start. We finish.
http://promotions.yahoo.com/new_mail

SPINA BIFIDA COMMUNITY SURVEY
http://66.34.105.118
Take the survey in September!

During the month of September, SBAA is conducting its
biannual national survey of adults and families living
with spina bifida and the caregivers and health care
providers who touch their lives.   Please take a few
minutes to fill out this survey at www.sbaa.org.  The
survey will help us develop programs for you. All
responses will remain confidential. Thank you!

ENCUESTA DE SPINA BIFIDA
http://66.34.105.118
¡Completar esta encuesta en septiembre!

Esta es una encuesta a nivel nacional para adultos y
familias que viven con la condición de espina bífida,
y para los proveedores de cuidado y servicios médicos
que forman parte de sus vidas. Por favor tome unos
breves minutos para completar esta encuesta para la
Asociación de Espina Bífida de América, www.sbaa.org,
la cual nos ayudará a desarrollar una variedad de
programas para usted. Sus respuestas serán
confidenciales. ¡Gracias!





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The SBANC Board of Directors recently voted in Julie Yindra -- an
educator in the Greensboro, NC area and an adult with spina bifida --
  as President. She replaces Mike Gates, who has become acting vice
president for SBANC.

Since she joined the SBANC Board in December 2000, Julie has proven
to be a leader and a tremendous asset. Her activities have included
providing a meeting location, hosting campus events to promote folic
acid and speaking at the state conference about learning
disabilities -- her area of expertise. We are looking forward to her
leadership.

In addition, Julie was elected to the SBAA Board of Directors at
this year's conference in Washington, DC.  She will head up the
young adult/teen programs.  Julie has already been working hard with
SBAA in talking with congressional representatives in Washington, DC
about the need to fund research on spina bifida through the CDC, and
she has served on several committee's.

Congratulations Julie!

Watch the sBANC Web site for more information at
http://www.sbanc.org

I'm kind of new to the group too, but I never had the nerve to introduce myself.
You've probably had quite a few welcom messages, but I wanted to add mine. I
hope everything is well with you. If you're ever on yahoo, I'd love to chat
sometime.. I haven't really talked with anyone who has spina bifida for a very
long time. It would be nice to get a female's perspective on life in general.

Take care,
David

hollybrat@... wrote:
Just wanted to write and introduce myself.  I'm new to the group.  My
name is Holly. I'm 25 and live in CT and have SB.  I'm planning on
moving to the Charlotte area next Spring.  So, I thought joining this
list would be a good idea.  It's nice to meet everyone!!

Holly


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[Non-text portions of this message have been removed]

Just wanted to write and introduce myself.  I'm new to the group.  My
name is Holly. I'm 25 and live in CT and have SB.  I'm planning on
moving to the Charlotte area next Spring.  So, I thought joining this
list would be a good idea.  It's nice to meet everyone!!

Holly

CONFERENCE REGULAR REGISTRATION RATES EXTENDED UNTIL
FRIDAY, MAY 21

It seems that spring just sneaked up on some of us.
So for those of you who are just coming out of
hibernation after a long cold winter, we’re extending
the regular registration dates for another week—just
as you asked.

SBAA Annual Conference
June 20-23, 2004 – Crystal City, Virginia (greater
Washington, DC)
http://sbaa.org/html/sbaa_conference_2004.html

Make your hotel reservations NOW! 703-418 -1234







__________________________________
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Register now for SBAA’s 2004 Annual Conference!
*REGULAR FEE - POSTMARK BY MAY 14*
June 20-23, 2004 – Crystal City, Virginia (greater
Washington, DC)

http://sbaa.org/html/sbaa_conference_2004.html

Make your hotel reservations NOW! 703-418 -1234






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SPINA BIFIDA COMMUNITY SURVEY
Go to http://66.34.105.118/sbaa/sbaa.asp
–OR–
www.sbaa.org and scroll down to “What’s New”

Extended until 12 midnight EST April 5th !

The SBAA biannual National Spina Bifida Community
Survey has been extended.  You can now take the survey
until 12 midnight EST April 5th.  So take a few
minutes either this week or over the weekend to fill
it out! The survey will help us develop programs for
you. All responses will remain confidential. Thank
you!

ENCUESTA DE SPINA BIFIDA
www.sbaa.org
Esta es una encuesta a nivel nacional para adultos y
familias que viven con la condición de espina bífida,
y para los proveedores de cuidado y servicios médicos
que forman parte de sus vidas. Por favor tome unos
breves minutos para completar esta encuesta para la
Asociación de Espina Bífida de América, la cual nos
ayudará a desarrollar una variedad de programas para
usted. Sus respuestas serán confidenciales. ¡Gracias!


__________________________________
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Yahoo! Finance Tax Center - File online. File on time.
http://taxes.yahoo.com/filing.html

SPINA BIFIDA COMMUNITY SURVEY
Go to http://66.34.105.118/sbaa/sbaa.asp
–OR–
www.sbaa.org and scroll down to “What’s New”

Only a few more days left!

During the month of March, SBAA is conducting its
biannual national survey of adults and families living
with spina bifida and the caregivers and health care
providers who touch their lives.   Please take a few
minutes to fill out this survey at the “What’s New
Section” of www.sbaa.org .  The survey will help us
develop programs for you. All responses will remain
confidential. Thank you!

ENCUESTA DE SPINA BIFIDA
www.sbaa.org
Esta es una encuesta a nivel nacional para adultos y
familias que viven con la condición de espina bífida,
y para los proveedores de cuidado y servicios médicos
que forman parte de sus vidas. Por favor tome unos
breves minutos para completar esta encuesta para la
Asociación de Espina Bífida de América, la cual nos
ayudará a desarrollar una variedad de programas para
usted. Sus respuestas serán confidenciales. ¡Gracias!


__________________________________
Do you Yahoo!?
Yahoo! Finance Tax Center - File online. File on time.
http://taxes.yahoo.com/filing.html

HAVE YOU TAKEN THE SURVEY YET?

SPINA BIFIDA COMMUNITY SURVEY
Go to www.sbaa.org, scroll down to the "what's new"
section and click on SPINA BIFIDA COMMUNITY SURVEY or
got there directly by going to:
http://216.97.50.109/SBAA/SBAA.ASP

SBAA is conducting a national survey of adults and
families living with spina bifida and the caregivers
and health care providers who touch their lives.  We
invite all members of the spina bifida community to
participate in this online survey. Please take a few
minutes to fill out this survey. The survey will help
us develop programs for you. All responses will remain
confidential. Thank you!

ENCUESTA DE SPINA BIFIDA

Esta es una encuesta a nivel nacional para adultos y
familias que viven con la condición de espina bífida,
y para los proveedores de cuidado y servicios médicos
que forman parte de sus vidas. Por favor tome unos
breves minutos para completar esta encuesta para la
Asociación de Espina Bífida de América, la cual nos
ayudará a desarrollar una variedad de programas para
usted. Sus respuestas serán confidenciales. ¡Gracias!

Adriane K. Griffen, MPH, CHES
Director, Public Health Programs
Spina Bifida Association of America
4590 MacArthur Blvd., NW, Suite 250
Washington, DC 20007-4226
Phone:  (202) 944-3285, x 13
Fax: (202) 944-3295
Email: agriffen@...

Take the Nat'l Spina Bifida Community Survey - Visit
www.sbaa.org or http://216.97.50.109/SBAA/SBAA.ASP





__________________________________
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SPINA BIFIDA COMMUNITY SURVEY
www.sbaa.org

During the month of March, SBAA is conducting its
biannual national survey of adults and families living
with spina bifida and the caregivers and health care
providers who touch their lives.   Please take a few
minutes to fill out this survey at the “What’s New
Section” of www.sbaa.org .  The survey will help us
develop programs for you. All responses will remain
confidential. Thank you!

ENCUESTA DE SPINA BIFIDA
www.sbaa.org
Esta es una encuesta a nivel nacional para adultos y
familias que viven con la condición de espina bífida,
y para los proveedores de cuidado y servicios médicos
que forman parte de sus vidas. Por favor tome unos
breves minutos para completar esta encuesta para la
Asociación de Espina Bífida de América, la cual nos
ayudará a desarrollar una variedad de programas para
usted. Sus respuestas serán confidenciales. ¡Gracias!


__________________________________
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Hi,

I am 38 years old with spina bifida also. I have health insurance through my
work but unfortunately it carries a "rider" that does not cover my spina bifida.
You will most likely find this to be true of most health insurance. I do know
that when you begin receiving disability that you become eligible for medicare
within two years.

This is the first message I've posted here and I am excited about meeting
everyone.

Take care,
Debi

I am 35 years old with spina bifida.  Recently had to quit working
and am now on disability.  I have NO health insurance coverage and am
having trouble finding reasonable cost coverage.  Please help?

Thanks!

Please reply to Carmengeya@...

Apply for a scholarship - Visit www.sbaa.org
1 year and 4 year scholarships available
Deadlines: 4 year scholarship-Feb. 15
            1 year scholarship-Apr. 1


The Spina Bifida Association of America Scholarship
Fund was established in 1988 to enhance opportunities
for persons born with spina bifida to achieve their
full potential through higher education.

SBAA is proud of all its members who choose to pursue
some form of higher education and we encourage and
applaud your goals and determination.  Please remember
that funds are limited, making it impossible to grant
every request.  The scholarship committee does its
very best to weigh all of the factors when choosing
the scholarship recipients.





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i have been an foster mon for this child for 6 months and im learning
soomething new everyday i need help in relating with her, she does
well as long as you dont try to interact with her she just want to be
along. she deos not want to share dinner time or anything

**************
SBAA NEWS
Special Edition
December 5, 2003
**************
TWO BIG WINS FOR SPINA BIFIDA ON CAPITOL HILL

The US Senate and House of Representatives both passed
the “Birth Defects and Developmental Disabilities
Prevention Act of 2003.” It will now go to President
Bush for his final signature before becoming law.

We are grateful to all of those who have worked so
hard on behalf of  the spina bifida community to make
the passage of this important act a reality. From our
leaders on the boards of SBAA and SBF who have spent
long hours on the Hill to those of you who made
visits, wrote letters and mailed in post cards—you
were all essential parts in our legislative action.
This is just the beginning. We will continue our
mission to advocate and affect change in legislation
at the national and local level.

A media release was sent to 3,500 newspapers,
magazines and television stations across the country.


National Spina Bifida Program Grows by $1 Million

Our hard work over the past year to grow the National
Spina Bifida Program at the CDC has been rewarded. We
have learned that the Labor HHS appropriations
conference report includes a total of $3M for the
National Spina Bifida Program, growing that program by
$1M!

This is a remarkable win for our community in these
challenging times.  It will mean that there will be a
greater investment by our nation in spina bifida
research and programs.

Thank you to the leadership of the Spina Bifida
Foundation who spent so much time meeting with Members
of Congress convincing them of the importance of this
program. Thank you also to all who actively
participated in meetings.

Finally, thank you to our grassroots advocates who
filled out post cards, sent letters and called
Congressional offices. Your work truly does make a
difference.


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Thanks to all who made our Annual Roast to benefit
spina bifida a success!

The Roast has received good media coverage including:

*Washington Post Style section today, Friday, October
10th.

*C-SPAN will air the Roast on Saturday, October 11th
(not sure of the time).

*The HBO show “K Street” will feature the Roast on
Sunday, October 12th.

Stay tuned!

-SBAA


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SBAA NEWS * SPECIAL EDITION *

Thanks to long time supporters Judy Woodruff and Hal
Pote, President of the Spina Bifida Foundation, CNN ‘s
American Morning will have a segment on  spina bifida
at 8:40am Eastern time on Wednesday, October 8th,
TOMORROW.   This 2-3 minute segment came about because
of Judy’s continued work on behalf of people with
spina bifida.  As you know, CNN broadcasts worldwide
and we are extremely excited about the segment and
pleased to share this with you.


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*SBAA NEWS*
October 3, 2003
a service of the Spina Bifida Association of America
for the spina bifida community
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1.) THINK INSIDE THE BOX!…

You still have time to BUY A CHANCE to win a new 2004
Porsche Boxster® and help support spina bifida
research.  Get your raffle ticket at www.sbaa.org or
call 1-800-939-5387.  Winning ticket will be drawn on
October 8, 2003 at the Annual Roast to benefit spina
bifida.

2.) SHOW YOUR SUPPORT

Show your support and Email your Legislators to
request funding for the National Spina Bifida Program
at the Centers for Disease Control and Prevention
(CDC). Let your legislators hear from you! Visit
www.sbaa.org and scroll down to the “What’s New”
section to email your legislator and show your
support.

3.) AWARENESS CAMPAIGN

October is a key time for our annual Spina Bifida
Awareness Campaign, which shares information about
what spina bifida is and how taking the B-vitamin
folic acid everyday can help reduce the risk of spina
bifida.  We have a new Awareness Campaign website
http://sbaa.org/html/sbaaac/index.html that has
user-friendly sections with downloadable materials
tailored for the media, local chapters and
professionals.

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LAST WEEK!
SBAA's follow up national survey of adults and
families living with spina bifida and the caregivers
and health care providers who touch their lives will
close Friday, August 29th at 5pm.
If you haven't yet, please take a minute to complete
this important survey! Go to www.sbaa.org, scroll down
to the "what's new" section and click on SPINA BIFIDA
COMMUNITY SURVEY or go directly to the survey at
http://216.97.50.109/
Thank you!

ENCUESTA DE SPINA BIFIDA
http://216.97.50.109/
¡LA ULTIMA SEMANA! Esta es una encuesta a nivel
nacional para adultos y familias que viven con la
condición de espina bífida, y para los proveedores de
cuidado y servicios médicos que forman parte de sus
vidas. ¡Gracias!


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SPINA BIFIDA COMMUNITY SURVEY REMINDER

The survey is almost over and we have not heard from
many of you.  Please take a few quick minutes to
complete this important survey!

To take the survey, go to www.sbaa.org, scroll down to
the "what's new" section and click on SPINA BIFIDA
COMMUNITY SURVEY or go directly to the survey at
http://216.97.50.109/


ENCUESTA DE SPINA BIFIDA
http://216.97.50.109/

Esta es una encuesta a nivel nacional para adultos y
familias que viven con la condición de espina bífida,
y para los proveedores de cuidado y servicios médicos
que forman parte de sus vidas. Por favor tome unos
breves minutos para completar esta encuesta para la
Asociación de Espina Bífida de América, la cual nos
ayudará a desarrollar una variedad de programas para
usted. Sus respuestas serán confidenciales. ¡Gracias!


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SPINA BIFIDA COMMUNITY SURVEY

Take a few quick minutes to complete this important
survey!

To take the survey, go to www.sbaa.org, scroll down to
the "what's new" section and click on SPINA BIFIDA
COMMUNITY SURVEY


ENCUESTA DE SPINA BIFIDA

Esta es una encuesta a nivel nacional para adultos y
familias que viven con la condición de espina bífida,
y para los proveedores de cuidado y servicios médicos
que forman parte de sus vidas. Por favor tome unos
breves minutos para completar esta encuesta para la
Asociación de Espina Bífida de América, la cual nos
ayudará a desarrollar una variedad de programas para
usted. Sus respuestas serán confidenciales. ¡Gracias!


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HAVE YOU TAKEN THE SURVEY YET?


SPINA BIFIDA COMMUNITY SURVEY
Go to www.sbaa.org, scroll down to the "what's new"
section and click on SPINA BIFIDA COMMUNITY SURVEY
SBAA is conducting a national survey of adults and
families living with spina bifida and the caregivers
and health care providers who touch their lives.  We
invite all members of the spina bifida community to
participate in this online survey:
• women at risk for recurrence
• adults living with spina bifida
• parents of a child with spina bifida
• sibling/relatives of a person living with spina
bifida
• caregiver or health care professional
  Please take a few minutes to fill out this survey.
The survey will help us develop programs for you. All
responses will remain confidential. Thank you!


ENCUESTA DE
SPINA BIFIDA

Esta es una encuesta a nivel nacional para adultos y
familias que viven con la condición de espina bífida,
y para los proveedores de cuidado y servicios médicos
que forman parte de sus vidas. Por favor tome unos
breves minutos para completar esta encuesta para la
Asociación de Espina Bífida de América, la cual nos
ayudará a desarrollar una variedad de programas para
usted. Sus respuestas serán confidenciales. ¡Gracias!


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