Hi! My name is Steve and I work for a medical supply company. I am in
the urological field and help people obtain their catheters. I usually
work with the sterile cath kits for people with UTI problems. I can
send out free information and samples to those interested. My email is
scourt@... or you can call me at 1-800-593-5556 and ask
for Steve in urology. I am not a pushy salesman or trying to pry into
anyone's business, just out to help where I can. Hope to hear from you
soon. Thank you.
Steve


Website: www.medmallonline.com and put my name as a contact.

Hi,

My name is Amy. I live in Gastonia N.C. I also have a son with Spina Bifida. He
is 4 years old and is the joy in our lives.  He also has a shunt.  He's been in
good health and just finished his first year in preschool.



---------------------------------


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

We are in the RTP area too.  Do you have SB?  My son, age 14 has SB.
It would be nice to meet some success story type people.  Actually
anybody with SB would me cool to hook up with.  We are new to the
east
and were hoping we could network with others here, but so far nothing
has panned out.



--- In sbaofnc@yahoogroups.com, shady_lain <no_reply@y...> wrote:
> Hi! I just wanted to introduce myself. I am a 33 year old lady who
> enjoys living life. I am from close to the Raleigh area in North
> Carolina. I look forward to making lots of new friends here. HUGS
to
> you all!

My family has been dealing with my brother being sentenced to prison.  I have
come to find out that more 2.5 million families are in the same situtation. Just
reaching out to help others that have loved ones in prison.  Check this
information out below it might be helpful. (WWW.ISTILLCARE.COM)




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

Hi! I just wanted to introduce myself. I am a 33 year old lady who
enjoys living life. I am from close to the Raleigh area in North
Carolina. I look forward to making lots of new friends here. HUGS to
you all!

SIBLING RESEARCH PROJECT

Volunteers 11-18 years of age with a brother or sister with spina bifida
and their parent are needed to take part in a study conducted through
Virginia Commonwealth University.  The study's purpose is to increase
understanding of siblings' thoughts, attitudes, and experiences.

The study is being led by Melissa Bellin, a social work doctoral student
at Virginia Commonwealth University, under the guidance of Dr. Kia J.
Bentley, social work faculty.

The study involves completion of a mailed survey by adolescent
participants that takes approximately 30 minutes.  Each adolescent
participant will receive a $15 gift certificate to Wal-Mart and will be
entered into a raffle for an additional $100 gift certificate to
Wal-Mart.

Parents complete a mailed one-page survey that takes approximately
5 minutes.  Parents will be entered into a raffle for a $100 gift
certificate to Wal-Mart.

Interested?     Please contact Melissa Bellin for additional information
and study packets.

CONTACT INFORMATION:

Email:  mahayden@...

Phone: (301)-528-4149 or toll-free 1-800-484-7508 (pin 1272)

Michele S. Duchin
Program Manager
Spina Bifida Association of America
4590 MacArthur Blvd., NW
Suite 250
Washington, DC  20007-4226
202-944-3285 x21
202-944-3295 (fax)
mduchin@...
www.sbaa.org

SIBLING RESEARCH PROJECT

Volunteers 11-18 years of age with a brother or sister with spina bifida
and their parent are needed to take part in a study conducted through
Virginia Commonwealth University.  The study's purpose is to increase
understanding of siblings' thoughts, attitudes, and experiences.

The study is being led by Melissa Bellin, a social work doctoral student
at Virginia Commonwealth University, under the guidance of Dr. Kia J.
Bentley, social work faculty.

The study involves completion of a mailed survey by adolescent
participants that takes approximately 30 minutes.  Each adolescent
participant will receive a $15 gift certificate to Wal-Mart and will be
entered into a raffle for an additional $100 gift certificate to
Wal-Mart.

Parents complete a mailed one-page survey that takes approximately
5 minutes.  Parents will be entered into a raffle for a $100 gift
certificate to Wal-Mart.

Interested?     Please contact Melissa Bellin for additional information
and study packets.

CONTACT INFORMATION:

Email:  mahayden@...

Phone: (301)-528-4149 or toll-free 1-800-484-7508 (pin 1272)

Michele S. Duchin
Program Manager
Spina Bifida Association of America
4590 MacArthur Blvd., NW
Suite 250
Washington, DC  20007-4226
202-944-3285 x21
202-944-3295 (fax)
mduchin@...
www.sbaa.org

> SBA seeks your input! In our continuous effort to keep information on
> our website fresh and of interest to the SB Community, we invite you
> to read about our "Real Stories" at www.sbaa.org/story_index and take
> the following short survey. Thank you and we look forward to your
> feedback.
>
> Please send your responses to Michele Duchin, Program Manager, at
> mduchin@... by July 15, 2005.
>
> 1.  Which of the Real Stories do you like most? Please rank the
> following stories from 1 to 10. Rank the story you like the most as 10
> and the story you liked the least as 1.
>
> *  Story #1 (Mother and college-aged daughter)
> *  Story #2 (Woman at computer)
> *  Story #3 (Young boy)
> *  Story #4 (Young girl)
> *  Story #5 (Father and son)
> *  Story #6 (Two children)
> *  Story #7 (Two young adults)
> *  Story #8 (Woman with doctor)
> *  Story #9 (Woman with two girls)
> *  Story #10 (Three adults)
>
> 2.  What types of story themes or issues would you like to see
> addressed in future Real Stories? (Please select all that apply.)
>
> *  Social issues (making friends, dating, getting married, having a
> family)
> *  Physical abilities (exercising, using a wheelchair, managing one's
> bowel/bladder programs)*  Emotional issues (depression, anxiety about
> discussing one's disability, dealing with how people think of spina
> bifida,
> etc.)
> *  Working and living in the community
> *  Prevention issues (genetic research, folic acid awareness)
>
> *  Other (please explain)
>
> 3.  Would you be interested in submitting 2-3 paragraphs (250 word
> limit) about your Real Story? SBA will review all submissions and may
> use your entry either in part or in its entirety.  Stories must be
> submitted by July 15, 2005. If you are interested in submitting your
> story, please provide your contact information:
>
> *  Name:
> *  Email:
> *  Country:
> *  Phone Number:
> *  What is your relationship to spina bifida?
>      * Adult
>      * Family (Please select all that apply.)
>           o  Parent of Child/Teen with spina bifida
>           o  Parent of Adult with spina bifida
>           o  Grandparent
>           o  Spouse/Partner of Person with spina bifida
>           o  I'm an adult Sibling
>           o  I'm a child/teen Sibling
>           o  Other family member
>           o  Family friend
>       * Child/teen with Spina Bifida
>       * Professional
>       * Other (please explain)
>
> Please send your responses to Michele Duchin, Program Manager, at
> mduchin@... by July 15, 2005.
>
> Thank you!
>
> Michele S. Duchin
> Program Manager
> Spina Bifida Association of America
> 4590 MacArthur Blvd., NW
> Suite 250
> Washington, DC 20007-4226
> 202-944-3285 x21
> 202-944-3295 (fax)
> mduchin@...
> www.sbaa.org
>
>
>
>


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

I found this article in the Charlotte Observer today. There's a new
company called Willow that will be bringing REAL work-from-home jobs
in customer service to the area at around $13 per hour. I don't know
anything more than what's in the article. There is an info session
next week in North Charlotte and there is a phone number and Web
site for more info  (please see below).

Not sure if they offer benefits but they do offer training. It could
be a nice opportunity for someone who wants or needs to work from
home and already has broadband and a phone line.

The article also mentions Medco -- another company operating in the
area with home workers doing pharmacy orders.

I've worked from a home office for IBM for about 5 years now (worked
10 years at the IBM facility before that) and it has been great for
me. I do employee communications, which includes newsletters and Web
pages.

I hope this info is helpful to someone.

Best regards!

-- Mike


Posted on Fri, Jun. 03, 2005


Stay home, talk, get paid

Company brings its home-shoring customer service operation to
Charlotte

LAURA YOUNGS

Staff Writer


As Charlotte continues to grow as a call-center hub, the city is
starting to see a twist in this type of customer service -- home-
shoring.

Also known as home-sourcing or onshoring, home-shoring is a system
that allows companies to route customer service calls to agents
working from their homes.

Florida-based Willow CSN Inc. plans to bring that concept -- and a
few hundred jobs -- to Charlotte this year.

CEO and President Basil Bennett said Willow decided to come to
Charlotte based on demand from people interested in working for the
company.

Willow's system routes customer service calls to appropriate agents,
who essentially are the middleman links between customers and Willow
clients such as Office Depot or Verizon. The biggest advantage to
systems like this, Bennett said, is that agents can work around busy
schedules and raising families. Agents sign up online to work as
many hours as they can. Work is available in 30-minute increments.

A person could work 10 hours one week and 50 the next, receiving an
average hourly pay of about $13-$14, he said. For some, Bennett
added, this is a full-time job. For others, it's supplementary
income.

"You don't have to send this work offshore," he said. "There are
very talented people here in the U.S. who are willing to work for a
reasonable price."

Charlotte is home to 32 traditional "brick and mortar" call centers,
which employ more than 11,350 people.

But the home-based concept is newer to the area. Kati Hynes,
director of economic development for the Charlotte Chamber of
Commerce, said she is aware of only one other company, Medco Health
Solutions, Inc., that is doing something similar.

Medco, which fills prescription drug orders, announced plans in
March to operate in Charlotte and bring about 150 jobs in the next
18 months, she said.

Willow and Medco will not have a physical location in Charlotte.

"It's great for people who want to work from their home and people
who are confined to their home," Hynes said.

Home-shoring has existed for years, said Stephen Loynd, senior
analyst for IDC, a Massachusetts-based technology research firm.

But ongoing controversy about offshoring -- sending jobs overseas at
a lower cost -- has increased home-shoring's popularity. Some
companies use a mix of home- and offshoring, allowing them to save
money as well as to send more technical questions to domestic
agents, he said.

Home-based agents can save businesses overhead costs such as real
estate and utilities, he added.

Bennett said positions are available, but the company is working on
getting classes set up for training. He said if Willow can set up a
class for later this month, they can have people earning money in
about 45 days.

He added that the company grows by about 175 jobs each month
nationally.

"I firmly believe that companies are looking for an alternative to
sending these jobs offshore," he said.

About WIllow

• Willow CSN info sessions will be 4 p.m. and 6 p.m. Tuesday at
the
Courtyard by Marriott, 333 W. W.T. Harris Blvd.• To register,
call
(866) 771-0041 or visit www.GoWillow.com.

Willow agents must have

• DSL line.

• Telephone line.

• Computer.

FAST FACTS

• There are an estimated 4 million traditional call centers
agents
in the United States and 115,000 in India.

• There are about 100,000 home-based U.S. phone representatives.

• Traditional call centers cost about $31 per employee hour,
including overhead and training.

• Home-based agents cost about $21 on average.

SOURCE: IDC report: "An Alternative to Offshore Outsourcing: The
Emergence of the Home-Based Agent," by Stephen Loynd and Brian
Bingham.


---------------------------------------------------------------------
-----------

Yes, I have heard of both of these procedures.  My daughter, now 9, had the
bladder neck done when she was 3.  It was done at the same time as a uretur
reimplantation.  They intended to do an augmentation at the same time, but
found she didn't need one.  For both the surgeries your son is having, he
will need a full bowel clean out.  This is typically not very pleasant.  The
surgeries will take a few hours and he will come out of surgery with a few
tubes coming out of his abdomen to keep the stoma open and to drain his
bladder until it heals.  The ACE stoma will take a week or two to heal until
it can be used, I believe.
Susan

   _____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
mkevinj1012
Sent: Friday, May 27, 2005 5:43 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] Surgeries


Has anyone heard of either of these surgeries?  If you have can you
please tell me a little about them.  My son, Keith - 8yrs old, is
scheduled to have the following surgeries at UNC-CH on August 10.  I
am trying to get as much information about them as possible.  Any help
is greatly appreciated.

Bladder Neck Reconstruction and Antigrade Colonic Enema Procedure

Thanks for your time
Kevin Jones




   _____

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

Has anyone heard of either of these surgeries?  If you have can you
please tell me a little about them.  My son, Keith - 8yrs old, is
scheduled to have the following surgeries at UNC-CH on August 10.  I
am trying to get as much information about them as possible.  Any help
is greatly appreciated.

Bladder Neck Reconstruction and Antigrade Colonic Enema Procedure

Thanks for your time
Kevin Jones

Hi, and welcome to NC!

Not sure where you live in NC, but we are in the Charlotte
area. Have used an approved contractor (named Vann Mann)for
a van lift. We were also impressed with Ilderton in High
Point, NC (over an hour away from us though).

We got funding for my daughter through a federally funded
state-administered program called CAP. It's paid for up to
$10,000 for a wheel chair lift for us (which was enough to
cover it all). Besides the adaptive equipment it also pays
for her wheel chair; Physical therapy (PT), ST and OT; as
well as a CAP assistant person and respite care.

We had to get on a waiting list and finally got approval
for this program. It's not based on income but is based on
the needs of the person. The more you need it the more
likely you'll get approved. Each county has a number of
slots and some have longer waiting lists than others. We
got approved when we lived inside the Charlotte limits, but
then moved from Mecklenburg to Union County and they had to
transfer Breanna's CAP slot. We have to re-apply each year
but as long as we do she keeps her slot.

Breanna has a T-12 Myelo and we expect her to start driving
in about 4 years (she's 11 1/2 now). She still walks in
chest high braces and uses a treadmill about 30 min. /day.
But she's in a wheel chair for most of the day.
She loves playing wheel chair basketball, riding horses and
her handcycle. She loves The Lord and she's sweet as honey
but has a grip like a bear trap :-)

We've talked to the Vann Mann about adaptations and it
doesn't sound like a big deal. They assess what the
individual person needs and give you the options. Sounds
like Garion might benefit from hand controls? But he
probably doesn't need a wheel chair lift or ramp. CAP
requires us to get a couple of estimates and the Vann Mann
knows exactly what to do to work with the process. It takes
awhile.

We currently have a '99 Pontiac Montana with a Super Arm
lift and tie downs. But we recently found out about a new
seat made by Toyota and Braun that rotates out and drops
down so Breanna can transfer into it. We're excited that we
can finally get a regular van without a lot of
modifications and Breanna can sit in a regular seat (which
is actually safer in crash tests) beside her brother! We've
applied for her to get a lighter aluminum frame wheel chair
and that will be easier to lift and put in the back of the
van.

Most auto manufacturers (except Honda) offer about $1,000
for adaptive equipment that's needed when you buy a NEW
car.

If you have more questions, please call my wife, Kim at
1-800-84-SBANC (7-2262). She's the executive director for
the SB Association of NC and knows way more than I do :-)

Hope some of this is helpful for you and others in the
group. I'd love to hear what others are doing.

Best regards!

-- Mike



--- lashahh <lashahh@...> wrote:
> In NC kids can get their driving permits at 15, right?
> Does anybody
> have experience with SB kids/adults driving?  Garion has
> L3-L4 Meylo
> and walks with AFOs and recently started using
> Loftstrands to improve
> his gait.
>
> Also, is it super expensive to retro-fit a car, if that's
> what he
> requires?  Are there any agencies to help with the cost?
>
>
>


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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http://discover.yahoo.com/mobile.html

At 09:28 PM 5/23/2005, you wrote:
>Also, is it super expensive to retro-fit a car, if that's what he
>requires?  Are there any agencies to help with the cost?

No idea what it costs, my daughter is years away from driving.
The major automakers (GM, Ford, Chrysler, Toyota, ??) offer
$1000 rebates on retrofitting by approved subcontractors
as well as extended financing. They do require a certified
evaluator to recommend the modifications. GMs web site has
some details and links
http://www.gm.com/automotive/vehicle_shopping/gm_mobility/lm_ci.html#top

In NC kids can get their driving permits at 15, right?  Does anybody
have experience with SB kids/adults driving?  Garion has L3-L4 Meylo
and walks with AFOs and recently started using Loftstrands to improve
his gait.

Also, is it super expensive to retro-fit a car, if that's what he
requires?  Are there any agencies to help with the cost?

I will be out of the office starting  05/19/2005 and will not return until
05/22/2005.

I will respond to your message when I return. If this is regarding Pompe
disease, please contact Stephanie DeArmey, PAC  DeArm001@...
Joanne

<><><><><><><><><><><><><><><>
Early Bird Reduced SBA Conference Registration
Extended Through JUNE 1

SBA'S ANNUAL CONFERENCE
“Building Bridges to Advance Understanding”
JUNE 26-29, 2005
HYATT REGENCY, MINNEAPOLIS, MN

<><><><><><><><><><><><><><><>

Response to SBA’s 32nd Annual Conference has been
OVERWHELMING!  We are looking forward to record
attendance.

SBA wants to give as many people as possible the
opportunity to take advantage of the LOW EARLY BIRD
REGISTRATION RATES so the deadline has been extended
to JUNE 1!

You can’t afford to miss the Annual Conference in
Minneapolis on June 26-29, 2005.  There will be
exceptional medical sessions, practical workshops,
outstanding exhibits and memorable social events.

REGISTER NOW to save!
• Do you want to register online? Click here!
https://registration.sitesolutionsworldwide.com/sbaa/formAdult.php
• Would you like to print out and fax your
registration?  Click here!
http://www.sbaa.org/site/DocServer/SBARegistrationNEW2.pdf?docID=1821
• Do you have questions?  Call SBA at 800-621-3141
between 8:30 am and 5:00 pm EST Monday through Friday.


To learn more about the Conference, click here or go
to www.sbaa.org.










Yahoo! Mail
Stay connected, organized, and protected. Take the tour:
http://tour.mail.yahoo.com/mailtour.html

Children With Spina Bifida is group intend for parents of children
that have SB, expectant parents of child that will be born with SB,
Adults with SB & to make women of child bearing age aware of the
cause and effects of SB. Here you will be able to talk with parents
that have children with SB, share life experiences, happy & sad
moments, surgeries, outcomes, and most of all those very cute
pictures of our Little Angels With Spina Bifida. Please don't be
scared to ask any question, because no question is dumb. Enjoy this
group and enjoy each others company because we are not alone.

We have many adults with SB in our group. We feel that you are a
great asset to us because you have lived with SB your entire life and
you could offer great advise as well as support to those who are just
learning abouts SB.

We have an enormous amount of links ranging from our support group to
our website. There is everything you need to know about Spina Bifida
here all in one stop.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Please take a moment to visit our websites:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Children With Spina Bifida Online Support Group

http://health.groups.yahoo.com/group/Childrenwithspinabifida/

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Welcome To Children With Spina Bifida

http://home.comcast.net/~mommy2ashlyn_n_skylyn/wsb/index.html

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Help Children and Adults With Disabilities

http://www.geocities.com/mommy2ashlyn_n_skylyn/Help-Children-and-
Adults-With-Disabilities.html

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The link from site to yours can be found here:

http://health.groups.yahoo.com/group/Childrenwithspinabifida/links

And will also appear on our website listed above! (making a special
support group page as wee speak)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

We would love to have you join our wonderful Spina Bifida On line
Support Group!

Please visit and join us!

Thanks,

Group Owner

Laura Ferguson

mailto:mommy2ashlyn_n-skylyn@...

> SBA'S ANNUAL CONFERENCE
> "> Building Bridges to Advance Understanding> ">
> JUNE 26-29, 2005
> HYATT REGENCY, MINNEAPOLIS, MN <><><><><><><><><><><><><><><><><><>
>
> REGISTER NOW to save!
https://registration.sitesolutionsworldwide.com/sbaa/formAdult.php
>
> DISCOUNTED CONFERENCE REGISTRATION ENDS ON SUNDAY, MAY 22!
>
> <><><><><><><><><><><><><><><><><><><><><><><><><>
> MAKE YOUR HOTEL RESERVATIONS NOW!
>
> Hyatt Regency, Minneapolis
> Phone: 612-370-1234
>
> The Millennium Hotel, Minneapolis
> Phone: 612-332-6000
>
> Approximately 70 rooms available at the Hyatt from 6/27 on and approximately
100 rooms available at the Millenium from 6/23 on.
>
> Each hotel will work with the guest to make the respective room accessible.
>
>
> Michele S. Duchin
> Program Manager
> Spina Bifida Association of America
> 4590 MacArthur Blvd., NW
> Suite 250
> Washington, DC  20007-4226
> 202-944-3285 x21
> 202-944-3295 (fax)
> mduchin@...
> www.sbaa.org
>
>
>


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

> SBA seeks your input! In our continuous effort to keep information on
> our website fresh and of interest to the Spina Bifida Community, we
> invite you to read about our "Real Stories" at
> www.sbaa.org/story_index and take a short survey, which can be found
> at www.sbaa.org/realstoriessurvey. This survey will also provide you
> an opportunity to tell us your "Real Story" of how spina bifida has
> affected your life.  SBA will review all submissions and may use your
> entry either in part or in its entirety. Stories must be submitted by
> June 15, 2005.
>
> Thank you and we look forward to your feedback.
>
> Sincerely,
>
> Michele S. Duchin
> Program Manager
> Spina Bifida Association of America
> 4590 MacArthur Blvd., NW
> Suite 250
> Washington, DC  20007-4226
> 202-944-3285 x21
> 202-944-3295 (fax)
> mduchin@...
> www.sbaa.org
>
>
>
>
>
>


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

<><><><><><><><><><><><><><><><><><>
SBA'S ANNUAL CONFERENCE
“Building Bridges to Advance Understanding”
JUNE 26-29, 2005
HYATT REGENCY, MINNEAPOLIS, MN

<><><><><><><><><><><><><><><><><><>
DISCOUNTED CONFERENCE REGISTRATION ENDS ON SUNDAY, MAY
22!

<<The cost of registering for SBA’s 32nd Annual
Conference GOES UP on May 23rd.>>

<><><><><><><><><><><><><><><><><><><><><><><><><>

REGISTER NOW to save!

•Do you want to register online?

Click here -
https://registration.sitesolutionsworldwide.com/sbaa/formAdult.php


•Would you like to print out and fax your
registration?

Click here -
http://www.sbaa.org/site/DocServer/SBARegistrationNEW2.pdf?docID=1821


•Do you have questions?  Call SBA at 800-621-3141
between 8:30 am and 5:00 pm EST Monday through Friday.


If you haven’t registered for the Spina Bifida
Association’s 32nd Annual Conference, you don’t know
what you’ll be missing.

<><><><><><><><><><><><><><><><><><><><><><><><><>

Learn more!

•Click here for a Conference overview!
http://www.sbaa.org/site/PageServer?pagename=sbaa_conference_2005


•Click here to see the Conference schedule!
http://www.sbaa.org/site/PageServer?pagename=sbaa_conference_2005_session_schedu\
le


•Click here for a partial list of sessions!  Click
here!
http://www.sbaa.org/site/PageServer?pagename=sbaa_conference_2005_session_descri\
ptions


•Click here to find out what is there to do in
Minneapolis!
http://www.sbaa.org/site/PageServer?pagename=sbaa_conference_2005_dfredrick


•Want to send a child to Kids!Camp?  Click here!
http://www.sbaa.org/site/PageServer?pagename=campaign_kidscamp&s_src=homepage




Keep watching your email for the latest news about the
32nd Annual Conference.  And visit SBAA’s website at
www.sbaa.org often for updates.  There’s always
something fresh and new online!








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<><><><><><><><><><><><><><><><><><>
SBA'S ANNUAL CONFERENCE
“Building Bridges to Advance Understanding”
JUNE 26-29, 2005
HYATT REGENCY, MINNEAPOLIS, MN
<><><><><><><><><><><><><><><><><><>

DISCOUNTED CONFERENCE REGISTRATION ENDS ON SATURDAY,
MAY 14!
<<The cost of registering for SBA’s 32nd Annual
Conference GOES UP on May 15.>>

<><><><><><><><><><><><><><><><><><><><><><><><><>

REGISTER NOW to save!
•Do you want to register online?
Click here -
https://registration.sitesolutionsworldwide.com/sbaa/formAdult.php

•Would you like to print out and fax your
registration?
Click here -
http://www.sbaa.org/site/DocServer/SBARegistrationNEW2.pdf?docID=1821

•Do you have questions?  Call SBA at 800-621-3141
between 8:30 am and 5:00 pm EST Monday through Friday.


If you haven’t registered for the Spina Bifida
Association’s 32nd Annual Conference, you don’t know
what you’ll be missing.

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Learn more!
•Click here for a Conference overview!
http://www.sbaa.org/site/PageServer?pagename=sbaa_conference_2005

•Click here to see the Conference schedule!
http://www.sbaa.org/site/PageServer?pagename=sbaa_conference_2005_session_schedu\
le

•Click here for a partial list of sessions!  Click
here!
http://www.sbaa.org/site/PageServer?pagename=sbaa_conference_2005_session_descri\
ptions

•Click here to find out what is there to do in
Minneapolis!
http://www.sbaa.org/site/PageServer?pagename=sbaa_conference_2005_dfredrick

•Want to send a child to Kids!Camp?  Click here!
http://www.sbaa.org/site/PageServer?pagename=campaign_kidscamp&s_src=homepage


Keep watching your email for the latest news about the
32nd Annual Conference.  And visit SBAA’s website at
www.sbaa.org often for updates.  There’s always
something fresh and new online!





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Hello to All.

I am a pediatric genetic counselor who is currently working with new
parents of a baby with thoracic spina bifida and moderately severe
hydrocephalus.  Unfortunately, these issues were not seen on prenatal
ultrasounds until very late in the third trimester.  Therefore, mom
and dad had little warning and are currently struggling with this new
diagnosis.  I am looking for a parent contact who may be helpful for
them when they are ready, preferably someone who also has a child
with thoracic spina bifida and shunting for hydrocephalus.

If you are interested, please contact me at
anne.baughman@...

Thank you for your time.

Anne

SBAA Annual Conference:  June 26-29
Register Online at www.sbaa.org

Make plans now to attend SBAA's Annual Conference,
June 26-29 at the Hyatt Regency, Minneapolis, MN. For
more information or to register, please visit
www.sbaa.org.  Please note that the early bird
registration date has been extended to Sunday, May
22nd. Register by this date to avoid late registration
fees.

Some highlights of the Conference will include:
-Sunday, June 26

-First Annual Adult Day, a new day a sessions just for
adults
-Group Member Day, training tailored for your needs
-NHPC (Nursing and Healthcare Professional Council)
Day, continuing education sessions for professionals

Monday, June 27–Wednesday, June 29

-Distinguished Medical Sessions
-Group Member Round Tables and Sessions
-Practical Workshops and more!

We hope to see you this June in Minneapolis!

Spina Bifida Association
4590 MacArthur Blvd., NW, Suite 250
Washington, DC 20007-4226
www.sbaa.org





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GRETCHEN WESTER <cntrygrl23@...> wrote:
The dr just gave us miralax for my son.  We have been trying to
control his bowel with prune juice, and it was working, but it seems
to have started to loose its affectivness.  Can anyone give me any
advice or info on the miralax.  Experiences- good/bad.....
Thanks,
Gretchen  - Mom to Gareth  15 months





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Hey Gretchen,

We have been using Miralax for over a year now.  It's great, no problems at all.

Amy, mom of 31/2 year old



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

The dr just gave us miralax for my son.  We have been trying to
control his bowel with prune juice, and it was working, but it seems
to have started to loose its affectivness.  Can anyone give me any
advice or info on the miralax.  Experiences- good/bad.....
Thanks,
Gretchen  - Mom to Gareth  15 months

ONLY 4 DAYS LEFT TO TAKE THE SURVEY!!
<><><><><><><><><><><><><><><><><><><>
Last Day of Survey - April 8
<><><><><><><><><><><><><><><><><><>

The National Survey of the Spina Bifida Community, a
biannual project of the Spina Bifida Association of
America (SBAA).  SBAA analyzes the findings to help
make the case for advocacy projects, educational
campaigns and ongoing programmatic efforts.  SBAA is
currently conducting the survey.  Please pass this
announcement along and let your voices be heard!

Thanks for your time!


Encuesta de Espina Bífida - para adultos y familias
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!

Thanks! ¡Gracias!

Spina Bifida Association of America
4590 MacArthur Blvd., NW, Suite 250
Washington, DC 20007-4226
Phone:  1-800-621-3141
Web:  www.sbaa.org





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Yahoo! Small Business - Try our new resources site!
http://smallbusiness.yahoo.com/resources/

We are new to the Triangle area and are looking forward to networking
with other SB families.  My son is 14 and has SB.  Is anyone intersted
in getting together?

*National Survey of the Spina Bifida Community*
Visit: http://66.34.105.118/
EXTENDED FOR ONE MORE WEEK
Last Day of Survey - April 8
<><><><><><><><><><><><><><><><><><>

The National Survey of the Spina Bifida Community, a
biannual project of the Spina Bifida Association of
America (SBAA).  SBAA analyzes the findings to help
make the case for advocacy projects, educational
campaigns and ongoing programmatic efforts.  SBAA is
currently conducting the survey.  Please pass this
announcement along and let your voices be heard!

Encuesta de Espina Bífida - para adultos y familias
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!

Thanks! ¡Gracias!

Spina Bifida Association of America
4590 MacArthur Blvd., NW, Suite 250
Washington, DC 20007-4226
Phone:  1-800-621-3141
Web:  www.sbaa.org





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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 SPRING 2005 CAREER EXPOS FOR HIRING ENTRY-LEVEL AND
                    PROFESSIONAL PEOPLE WITH DISABILITIES TAKES PLACE
                    IN NEW YORK CITY AT THE HOTEL PENNSYLVANIA ON APRIL 8TH
                   AND IN BOSTON ON MAY 6TH AT THE MARRIOTT COPLEY HOTEL.

THE NEW YORK CITY AND BOSTON CAREER EXPOS FOR PEOPLE WITH DISABILITIES,
SPONSORED BY THE ASSOCIATION OF HIGHER EDUCATION AND DISABILITY, MAYOR’S
OFFICE FOR PEOPLE WITH DISABILITIES IN NEW YORK CITY, AND THE MASSCHUSETT’S
DIVISION OF CAREER SERVICES, ARE BOTH HOSTED BY THE NATION’S LEADING CAREER
MAGAZINE FOR PEOPLE WITH DISABILITIES, CAREERS & THE disABLED.

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/EXPOREGISTRATION.HTML.  PLEASE ADVISE THEM TO CHECK OFF IF THEY
ARE ATTENDING THE EVENT, AND TO INDICATE IF THEY WILL BE AT NEW YORK CITY OR
BOSTON CAREER EXPOS.

  ALSO, PLEASE TELL YOUR JOB CANDIDATES THAT ALL PRE-REGISTERED 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.

HERE IS A GROWING LIST OF COMPANIES AND GOVERNMENT AGENCIES THAT HAVE
ALREADY SIGNED UP TO RECRUIT AT THE CAREER EXPOS:
Lockheed Martin, 13th Annual Award Reception Sponsor,(NYC,Boston) Raytheon,
Silver Sponsor,(NYC&BOSTON) AT&T, Bronze Sponsor,(NYC) Memorial Sloan
Kettering Hospital, Bronze Sponsor,(NYC) Hewlett Packard,
BronzeSponsor,(NYC)Verizon,BronzeSponsor,(NYC&BOSTON),
McGraw Hill-Bronze Sponser, NYC, HSBC Bank,(NYC) Prudential Life,(NYC) Camp,
Dresser & McKee,(BOSTON) J.P. Morgan Chase,(NYC) Panasonic,(NYC) General
Electric Corporate Financial Services,(NYC) Wal-Mart,(BOSTON) New York Life
Insurance,(NYC) Bloomberg,(NYC) Central Intelligence Agency,(NYC) National
Security Agency,(NYC) WGBH Radio & TV,(BOSTON) U.S. Postal Service,(NYC and
Boston), Farm Credit,(NYC) U.S. Secret Service,(NYC&BOSTON), General
Dynamics-Electric Boat and C4 Division(Boston), NAVAIR,(BOSTON) NGA,(NYC)
Internal Revenue Service,(NYC&BOSTON) FBI,(NYC) Defense Intelligence
Agency,(NYC) Fannie Mae,(NYC) Social Security Agency, (NYC&BOSTON) U.S. Air
Force,(NYC) U.S. Coast Guard,(NYC) U.S. Department of State,(NYC) National
Credit Union,(NYC) United Space Alliance,(NYC) Naval Surface Warfare,(NYC)
U.S. Department of Labor,(NYC) Veterans Administration, (NYC&BOSTON) U.S.
Department of Energy,(NYC) U.S. Customs,(NYC) and Defense Logistics
Agency(NYC), Citi Group (NYC), Center for Medicare and Medicaid (NYC), and
Environmental Protection Agency, (NYC).

WE WANT TO THANK YOU FOR YOUR HELP IN GETTING THE WORD OUT ABOUT THESE TWO
EXCITING CAREER EVENTS ON BEHALF OF PEOPLE WITH DISABILITIES, AND WE LOOK
FORWARD TO WORKING WITH YOU ON THE NEW YORK CITY AND BOSTON EVENTS WHICH WE
EXPECT WILL HAVE A RECORD TURNOUT. LAST SPRING, THE NEW YORK CITY CAREER
EXPO HAD 1,231 JOB CANDIDATES ATTEND AND WE ANTICIPATE OVER 1,000 FOR THE
BOSTON CAREER EXPO.

WARMEST REGARDS,

  JOHN MILLER, PUBLISHER, CAREERS & THE DISABLED MAGAZINE
631-421-9421, EXT. 20
EMAIL:JMILLER@...
WEBSITE:WWW.EOP.CO

*National Survey of the Spina Bifida Community*
Take the survey in March!
Visit: http://66.34.105.118/
<><><><><><><><><><><><><><><><><><>

The National Survey of the Spina Bifida Community, a
biannual project of the Spina Bifida Association of
America (SBAA).  SBAA analyzes the findings to help
make the case for advocacy projects, educational
campaigns and ongoing programmatic efforts.  SBAA is
currently conducting the survey during the month of
March.  Please pass this announcement along to any
other member of the Spina Bifida Community that you
know!  This includes:
-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

Pass it along!

Many thanks!

-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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