We live in Whitsett, NC.  We now have a daughter who was born Jan. 9 with Spina
Bifida.  Because we knew through prenatal testing, we were referred to Duke.  We
are learning the process of who we talk to and also how to receive services. 
Duke has been excellent in helping us understand what we need to do to help care
for our little girl.  I have learned that Duke has a myleo clinic once a month
where we will continue to return for follow up visits with the team of drs. that
are following her.  So far we know we need to cath every 6 hrs.  It is my
understanding that her nerves are still in shock from her surgery to close her
back so we really won't know what nerves have been affected until later on.  She
also had a shunt surgery this past Tuesday.  She is doing wonderful and we are
expected to be discharged from the hospital today if all continues to go well.
   Feel free to contact me as well!!  I'm also a prek teacher in Guilford county
schools and am somewhat familiar with preschool exceptional children's
department.
   Marie


---------------------------------
Sucker-punch spam with award-winning protection.
  Try the free Yahoo! Mail Beta.

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

My daughter has Spina bifida Occulta.... There seems to be so much
debating going on about whether
TCS (tethered cord syndrome) or LMC (lipomyelomeningocele)
are an actual form of SB. All I know is that when my daughter was a
week old I was told she had Spina Bifida Occulta. My daughter has
had surgery to detether her spinal cord at 3 months of age. She has
nuerogenic bladder and bowel, we cath every 4 hours and we do a
regimine of fiber and suppositories to train her bowels. She has leg
length discrepancies and wears an AFO on her left leg. Her left calf
lacks muscle tone. She also has a large hemangioma on her left hip
and buttock and has a skin tag and the dimples on her buttocks. I
don,t know if she is eligible for CAP-C services as I really don't
know what they are. I am not sure what kind of support groups there
are in my area, but we did go the Guilford County Exceptional
Childrens office today and fill out forms to have my daughter
evaluated for an IEP. She turned 4 in December. What I would really
like is to have some friends here that I can support emotionally as
well as receiving support from them.
Faith


--- In sbaofnc@yahoogroups.com, "Susan Collins" <susancollins@...>
wrote:
>
> We have CAP-C services in Forsyth County and I can get you the
name of our
> cap manager and her phone number.  I imagine she can get you to
the right
> number for High Point.  CAP seems to be held on to tightly around
here and
> no one knows about it.  Most of the time Medicaid offices haven't
heard of
> it either.
>
> Susan
>
>
>
>   _____
>
> From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On
Behalf Of
> Mari Pedersen
> Sent: Thursday, January 18, 2007 9:55 PM
> To: sbaofnc@yahoogroups.com
> Subject: RE: [SBAofNC] New to NC
>
>
>
> Al,
>
> I have an 8 yo son with SB, neurogenic bladder and bowel, etc. We
live in NC
> too. Can you explain what you said about where to get started with
services.
> I am not familiar with the acronyms that you used, or even where
to get
> started calling.
>
> Mari
>
> -----Original Message-----
> From: sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com
> [mailto:sbaofnc@yahoogroups <mailto:sbaofnc%
40yahoogroups.com> .com] On
> Behalf Of
> Alfred Lyons
> Sent: Wednesday, January 17, 2007 2:30 PM
> To: sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com
> Subject: Re: [SBAofNC] New to NC
>
> Hi Faith,
>
> We are new to NC too (since August 2006), and living
> in Asheville. I am unsure how close that is to
> Highpoint. We are still linking to services. We go to
> Shriners Hospital in Greenville, SC. Here in
> Asheville, Mission Hospital has a good parent support
> group for families of special kids (not necessarily
> SB). We called Western Highlands (NC local management
> entity) for help getting linked to services, and to
> get placed on the CAP Waiver wait list. I don't know
> who the LME is for High Point.
>
> Al Lyons
> Al & Karen
> Ana (8yo w/SB), Gracie (3yo) and Benjamin (2yo)
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

We have CAP-C services in Forsyth County and I can get you the name of our
cap manager and her phone number.  I imagine she can get you to the right
number for High Point.  CAP seems to be held on to tightly around here and
no one knows about it.  Most of the time Medicaid offices haven’t heard of
it either.

Susan



   _____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
Mari Pedersen
Sent: Thursday, January 18, 2007 9:55 PM
To: sbaofnc@yahoogroups.com
Subject: RE: [SBAofNC] New to NC



Al,

I have an 8 yo son with SB, neurogenic bladder and bowel, etc. We live in NC
too. Can you explain what you said about where to get started with services.
I am not familiar with the acronyms that you used, or even where to get
started calling.

Mari

-----Original Message-----
From: sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com
[mailto:sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com] On
Behalf Of
Alfred Lyons
Sent: Wednesday, January 17, 2007 2:30 PM
To: sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com
Subject: Re: [SBAofNC] New to NC

Hi Faith,

We are new to NC too (since August 2006), and living
in Asheville. I am unsure how close that is to
Highpoint. We are still linking to services. We go to
Shriners Hospital in Greenville, SC. Here in
Asheville, Mission Hospital has a good parent support
group for families of special kids (not necessarily
SB). We called Western Highlands (NC local management
entity) for help getting linked to services, and to
get placed on the CAP Waiver wait list. I don't know
who the LME is for High Point.

Al Lyons
Al & Karen
Ana (8yo w/SB), Gracie (3yo) and Benjamin (2yo)





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

Al,

I have an 8 yo son with SB, neurogenic bladder and bowel, etc. We live in NC
too. Can you explain what you said about where to get started with services.
I am not familiar with the acronyms that you used, or even where to get
started calling.

Mari

-----Original Message-----
From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
Alfred Lyons
Sent: Wednesday, January 17, 2007 2:30 PM
To: sbaofnc@yahoogroups.com
Subject: Re: [SBAofNC] New to NC

Hi Faith,

We are new to NC too (since August 2006), and living
in Asheville. I am unsure how close that is to
Highpoint. We are still linking to services. We go to
Shriners Hospital in Greenville, SC. Here in
Asheville, Mission Hospital has a good parent support
group for families of special kids (not necessarily
SB). We called Western Highlands (NC local management
entity) for help getting linked to services, and to
get placed on the CAP Waiver wait list. I don't know
who the LME is for High Point.

Al Lyons
Al & Karen
Ana (8yo w/SB), Gracie (3yo) and Benjamin (2yo)

Hi Faith,

   My name is Cynthia, I also have a 3 1/2 child with (Spina Bifida)  bladder and
Bowel
   movement problems.

   We live in Monroe, NC. I would love to exchange emails with you about our
children.

   Cynthia

Faith <fazedva@...> wrote:
           Hi all!
I was just wondering if there are any families out there near high
point nc, I have a 4 year old with tcs, nuerogenic bladder and bowel
etc. I would love to find someone close to talk to about things and
maybe even get some assistance with programs that are available in our
area.
Thanks, Faith






---------------------------------
We won't tell. Get more on shows you hate to love
(and love to hate): Yahoo! TV's Guilty Pleasures list.

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

Hi,
I have SB at L4.

Lisa


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

Hi!  We live near Winston-Salem.  I have an 11 year old daughter with SB L3.

Susan



   _____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
Faith
Sent: Wednesday, January 17, 2007 12:21 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] New to NC



Hi all!
I was just wondering if there are any families out there near high
point nc, I have a 4 year old with tcs, nuerogenic bladder and bowel
etc. I would love to find someone close to talk to about things and
maybe even get some assistance with programs that are available in our
area.
Thanks, Faith







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

Faith,
Hey!  I'm a 29 year old female with spina bifida living in the Winston-
Salem, NC.  I know that Baptist Hospital here in Winston-Salem has a
SB clinic as well as a VR counselor who could probably connect you
with some other services.  Let me know if I can be of any more help.

Lisa Pubantz


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

<>Spina Bifida Association Updates<>

1. SBA 34th Annual Conference in Louisville Kentucky
June 24 - June 27, 2007
Register Online Now

SBA's Annual Conference has earned its place as the
world's premier conference serving the Spina Bifida
Community. Our presence in Louisville - site of SBA's
largest conference a decade ago - will add to the
excitement of the experience for all who attend.

Home to the Kentucky Derby and featuring over 980
miles of the Ohio River, Louisville is within a day's
drive of half of the nation's population and easily
accessible by air.

Register Now!
http://registration.sitesolutionsworldwide.com/synergy/v_1_/home/?id=118

Who Should Attend?
Adults with Spina Bifida: Gain vital information about
making the most of your life and health.
Parents of Children with Spina Bifida: Learn
innovative ways to help your children grow into
independent and active adults.
Children with Spina Bifida: Experience the fun of
Kids!Camp. Learn how much you can accomplish from
other kids while having the time of your life!
Medical Professionals: Sharpen your clinical skills
and gain insight into cutting edge therapies.
Group Member Leadership: Network with other leaders
while attending helpful workshops designed to increase
rewards and ease challenges.
Register online today! Or call 1-800-621-3141 to have
a packet sent to you.

2. Sale! Health Guide for Adults Living with Spina
Bifida

The Spina Bifida Association (SBA) is proud to offer
its “Health Guide for Adults Living with Spina
Bifida.”

Providing health information and resources to help
manage health and prevent further complications, this
special discounted bulk rate pricing* is available for
a limited time only.

0 – 10 copies     $9.99 each
11 – 100 copies   $8.99 each
100 or more copies  $7.99 each

Please visit the SBA Web site at
www.sbaa.org/adulthealthguide for more information or
call 1-800-621-3141 to place your order today.

* Offer expires 3/15/07. Price does not include
shipping and handling.

3. NEW! Health Guide For Parents of Children Living
with Spina Bifida

The Spina Bifida Association (SBA) is proud to debut
the new "Health Guide for Parents of Children Living
with Spina Bifida."

Order your advance copy today at the discounted rate
of $9.99*. This need-to-have guide covers Spina Bifida
health issues and information from newborn to
teenager.

Please visit the SBA Web site
www.sbaa.org/parenthealthguide for more information or
call 1-800-621-3141 to reserve your copy today.

* Offer expires 2/16/07.


<>Please pass these updates along!<>
<>For more information on the Spina Bifida
Association, please visit www.sbaa.org.<>




________________________________________________________________________________\
____
Looking for earth-friendly autos?
Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center.
http://autos.yahoo.com/green_center/

Hi Faith,

We are new to NC too (since August 2006), and living
in Asheville. I am unsure how close that is to
Highpoint. We are still linking to services. We go to
Shriners Hospital in Greenville, SC. Here in
Asheville, Mission Hospital has a good parent support
group for families of special kids (not necessarily
SB). We called Western Highlands (NC local management
entity) for help getting linked to services, and to
get placed on the CAP Waiver wait list. I don't know
who the LME is for High Point.

Al Lyons
Al & Karen
Ana (8yo w/SB), Gracie (3yo) and Benjamin (2yo)

--- Faith <fazedva@...> wrote:

> Hi all!
> I was just wondering if there are any families out
> there near high
> point nc, I have a 4 year old with tcs, nuerogenic
> bladder and bowel
> etc. I would love to find someone close to talk to
> about things and
> maybe even get some assistance with programs that
> are available in our
> area.
> Thanks, Faith
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>

Hi all!
I was just wondering if there are any families out there near high
point nc, I have a 4 year old with tcs, nuerogenic bladder and bowel
etc. I would love to find someone close to talk to about things and
maybe even get some assistance with programs that are available in our
area.
Thanks, Faith

Please ignore both this person's posts. It could be a
virus...

I have banned this person.

Thanks!

Mike

--- Download <jo_naso@...> wrote:

> Hello friends,
>
> Yes this book is about cooking, at least someting tasty
> :)
>
> Salad Master
>
>
http://www.novaupload.com/files/QHEYYY/Salad_Master.pdf.aspx
>
> Enjoy cooking,
>


       Michael H. Gates
   General Contractor
   Gatekeeper Group, Inc.
   704-488-3040
   P.O Box 2805, Indian Trail, NC 28079
     sales@...
   http://www.gatekeepergroupinc.com






__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

Please ignore both of this person's posts; this looks like
a virus. I have banned them.

Mike


--- Download <jo_naso@...> wrote:

> Hello friends,
>
> I hold no responsibility about any misuse of this book,
> it is just meant t teach you how to defense against fraud
>
> Credit.Card.Visa.Hack
>
>
http://www.novaupload.com/files/SLTWAV/Credit.Card.Visa.Hack.Ucam.Cl.Tr.560.pdf.\
aspx
>
> Enjoy reading,
>


       Michael H. Gates
   General Contractor
   Gatekeeper Group, Inc.
   704-488-3040
   P.O Box 2805, Indian Trail, NC 28079
     sales@...
   http://www.gatekeepergroupinc.com






__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

SAVE THE DATES!
Spina Bifida Association
2007 Annual Conference
June 24 – 27, 2006
Louisville, Kentucky

Conference Hotel

The Galt House & Suites
Reservation Line: 800-843-4258
140 North Fourth Street
Louisville, KY 40202
                                                 Direct
Hotel Line: 502-589-5200

Single/Double/Quad Rate: $148.36 per night ($129.00 +
plus applicable taxes)

Tell Reservationist that you are with the Spina Bifida
Association Conference 2007


__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

Reann,  Congratulations on your new little girl!  You did not say if your
other children were girls or boys.  I am the mother of a child born with
Spina Bifida (L4-5) and hydrocephalus. We did not know before he was born
that he had spina bifida. His first five years of life seemed like one
surgery after another! He was our 5th child and he has 1 sister and 5
brothers (we had another boy after he was born!) Chris was a fighter since
the day he was born and I will not bore you with the details of the story!
I will tell you that he is a very bright young man - graduated from
college, drives a car (wth hand controls), lives in his own home, and works
for the State of North Carolina in the Office of Disability and Health
teaching people how to make exercise and recreational facilities accessible
to people of all abilities!  Physically he is paralyzed totally below the
knee and partially below the waste. He can walk with braces and crutches
but now that he is 28 years old he prefers to use his wheelchair most of
the time.  He has a neurogenic bladder and has catheterized himself since
he was 4 years old. He has a bowel routine that he follows to avoid
accidents. He is an excellent athlete and has been a competitive swimmer.
He has had excellent, consistent, aggressive medical care from the time he
was 3 months old and I feel that has bee the key to his success - that and
having to be the younger of several siblings!  I have attached a picture
that is 2 years old but shows that he is very important part of our family.
Although no-one can promise that your child will do as well as Chris, the
potential is always there. My advice is to have fun with your daughter!
Take one day at a time and face the challenges that must be faced as they
come! Be a fierce advocate for her inclusion totally into all aspects of
life and learn everything you can!
Good luck with your pregnancy and your baby.
Joanne
(See attached file: new42.JPG)


Joanne Mackey, RN, MSN, CPNP
Duke University Medical Center
Division of Medical Genetics
(919)681-1945

"The information contained in this electronic mail transmission contains
confidential information belonging to the sender that is legally
privileged.  This information is intended only for the use of the
individual or entity named above.  The authorized recipient of this
information is prohibited from disseminating, distributing, or copying this
information.  If you have received this information in error please delete
this message, any attachments, and all copies and backups from your
computer and notify the sender immediately by replying to this message or
call 919.668-1100 or 1.800.MED-DUKE."



              "reannjenkins"
              <reannjenkins@yah
              oo.com>                                                    To
              Sent by:                  sbaofnc@yahoogroups.com
              sbaofnc@yahoogrou                                          cc
              ps.com
                                                                    Subject
                                        [SBAofNC] spina bifida
              10/18/2006 07:08
              AM


              Please respond to
              sbaofnc@yahoogrou
                   ps.com






my name is reann i am 25 and from wales (UK) i have 2 kids and
pregnant with my 3, we have been told that she has spina bifida. she
has the meningocele type which is at L4L5 the doctor also said she
would have bowel and biadder problems and also hydrocephalus which
they are keeping a eye on she has  talipes whch means she has a slight
turn in her left foot, we wolud be very greatful for any infor on her
type of SB as all we have been told is that she should develope
normally. if you wolud like to e mail me at reann@... or you
could write to me 23 church steet,caerau,maesteg,bridgend,mid glam,S
WALES UK CF34 0UY.





Yahoo! Groups Links






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

my name is reann i am 25 and from wales (UK) i have 2 kids and
pregnant with my 3, we have been told that she has spina bifida. she
has the meningocele type which is at L4L5 the doctor also said she
would have bowel and biadder problems and also hydrocephalus which
they are keeping a eye on she has  talipes whch means she has a slight
turn in her left foot, we wolud be very greatful for any infor on her
type of SB as all we have been told is that she should develope
normally. if you wolud like to e mail me at reann@... or you
could write to me 23 church steet,caerau,maesteg,bridgend,mid glam,S
WALES UK CF34 0UY.

Well we heard about the shriners, I tried calling the local shriners
club but no one ever picks up their phone.  But they only do
orthopedic diagnosis help, they helped my friends daughter with her
knee surgery. My son is cognitivly at his age, so I don't know if
any mentally handicapped agencies can help out.  I really think We
should get CAP C this time around.  I've never heard of TRiad
families, I'm down on the coast, alot of the resources avialable are
inland.

--- In sbaofnc@yahoogroups.com, "Susan Collins" <susancollins@...>
wrote:
>
> I have found that it is nearly impossible to find the programs in
NC.  If
> you qualify for SSI (which is income based) then your child
automatically
> gets Medicaid.  The waiver program isn't income based as long as
the child
> doesn't have a trust fund or something in his/her name.  There are
two
> waivers in NC, one called CAP-C and the other CAP MR/DD.  CAP-C is
for kids
> that are more medically involved than mentally, from my
understanding.  Have
> you called the ARC in your county?  ARC stands for Association for
retarded
> Citizens.  they may be able to point you in the right direction.
Even if
> you are turned down, keep applying or appeal because if you are
accepted,
> you will get back coverage to the original date of application.  I
used to
> have the sites saved to go to in NC, but I lost them all when my
hard drive
> failed.  Try these...
>
http://www.workworld.org/wwwebhelp/ssi_state_supplement_north_carolin
a.htm
> http://zeus.dhhs.state.nc.us/olm/manuals/dhs/pol-
40/man/medicaid_waiver_reqs
> _apps1.htm
> http://www.cms.hhs.gov/home/medicaid.asp
>
> Also, you may want to contact Shriner's Hospital.  The closest to
me is in
> Greenville, SC.  A lot of times they can provide transportation to
and from
> appointments if that is a problem for you.
>
> If you still can't find help, let me know and I can get in touch
with a lady
> in Wisconsin that has links to all the waiver programs.  Oh, have
you tried
> calling Triad First in Families?
>
> Susan
>
>   _____
>
> From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On
Behalf Of
> Kellie Moors
> Sent: Saturday, August 26, 2006 3:04 PM
> To: sbaofnc@yahoogroups.com
> Subject: RE: [SBAofNC] Declined!!
>
>
>
> They told me if we don't qualify SSI and because that we didn't
qualify for
> that we didn't get medicaid,when I asked another way they said a
waiver
> program,but I've been turned down twice, and yes I think the first
time it
> was because he was so young, but this second time between the
program
> protocol and paper and the social worker not returning calls we
got turned
> down agian for MR/DD. Cognitive is the only area he isn't delayed
in, maybe
> fine motor too. It's not like I want money or food stamps, but we
may be
> losing my husbands military insurance soon, which hardly pays
visits, but
> it's better then nothing. And I was told by the employment
comission that I
> could have made trouble for my employer, but I was still seven
months
> pregnant at the time and had other things on my mind at the time,
and after
> my focus is on my family. I still run into these people and it
wouldn't be
> worth it, I would rather get the help we really need, but cannot
get.
>
> Susan Collins <susancollins@ <mailto:susancollins%40bellsouth.net>
> bellsouth.net> wrote: CAP C isn't income dependant. My daughter
has CAP C.
> You have to qualify
> on 3 of the 5 delays that are possible. This is where you have to
really
> think about where your child is developmentally. I think the areas
where
> delays need to be include behavioral, gross motor, fine motor,
self help and
> ...maybe emotionally (or is that the same as behavioral??) or
could it be
> speech? If it is speech, he should qualify under gross motor,
speech and my
> guess fine motor since a lot of kids with SB struggle with fine
motor
> issues. Self help will be hard to get at his age as many 2 year
olds are
> totally dependent on their parents. Don't you have grounds to sue
your
> employer for firing you due to a family medical leave? Even if you
get on
> CAP MR/DD in many counties there are waiting lists that are years
long.
> Also look into Children's special health services, or is it Special
> Children's Health Services? What area of NC are you in?
> Susan
>
> _____
>
> From: sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com
> [mailto:sbaofnc@yahoogroups <mailto:sbaofnc%
40yahoogroups.com> .com] On
> Behalf Of
> kellie_moors
> Sent: Friday, August 25, 2006 7:27 PM
> To: sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com
> Subject: [SBAofNC] Declined!!
>
> I found out that my two year old had spina bifida when I was
twenty
> three weeks pregnant. And because I'm a nurse and proactive I had
my
> husband shipped off a mountian in Afghanistan and we traveled 1000
> miles for the MOMs study. Well we were declined because the MRI
said
> he didn't have any nerve in his meningocele so he wouldn't benefit
> from the surgery. Then my employer, declined to have me restart
work
> because I had been gone 5 weeks. My husband got out of the
military
> on disablity and we have since been declined by SSI two times, I
> cannot get the SBA to call back, Medicaid was approved until he
turned
> one year. And because my husband doesn't work we have been
struggling
> with all the therapy appointments and my husband's own diagnosis.
And
> my other son is suffering 'what about me's. CAP MR/DD just turned
us
> down after we applied in may and their slots closed in june. But
the
> mental health case worker dropped the ball and never called. I
called
> a lawyer, but they aren't accepting new clients. I have taken all
> tuesdays off of work for PT and speech but really cannot afford
it.
> WHAT NEXT? What do you apply for when you've been turned down by
> everything? I'm going to try for CAPs C but I've been told we make
to
> much, I don't see how when I just making bills.
>
> [Non-text portions of this message have been removed]
>
>
> ---------------------------------
> All-new Yahoo! Mail - Fire up a more powerful email and get things
done
> faster.
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

I have found that it is nearly impossible to find the programs in NC.  If
you qualify for SSI (which is income based) then your child automatically
gets Medicaid.  The waiver program isn't income based as long as the child
doesn't have a trust fund or something in his/her name.  There are two
waivers in NC, one called CAP-C and the other CAP MR/DD.  CAP-C is for kids
that are more medically involved than mentally, from my understanding.  Have
you called the ARC in your county?  ARC stands for Association for retarded
Citizens.  they may be able to point you in the right direction.  Even if
you are turned down, keep applying or appeal because if you are accepted,
you will get back coverage to the original date of application.  I used to
have the sites saved to go to in NC, but I lost them all when my hard drive
failed.  Try these...
http://www.workworld.org/wwwebhelp/ssi_state_supplement_north_carolina.htm
http://zeus.dhhs.state.nc.us/olm/manuals/dhs/pol-40/man/medicaid_waiver_reqs
_apps1.htm
http://www.cms.hhs.gov/home/medicaid.asp

Also, you may want to contact Shriner's Hospital.  The closest to me is in
Greenville, SC.  A lot of times they can provide transportation to and from
appointments if that is a problem for you.

If you still can't find help, let me know and I can get in touch with a lady
in Wisconsin that has links to all the waiver programs.  Oh, have you tried
calling Triad First in Families?

Susan

   _____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
Kellie Moors
Sent: Saturday, August 26, 2006 3:04 PM
To: sbaofnc@yahoogroups.com
Subject: RE: [SBAofNC] Declined!!



They told me if we don't qualify SSI and because that we didn't qualify for
that we didn't get medicaid,when I asked another way they said a waiver
program,but I've been turned down twice, and yes I think the first time it
was because he was so young, but this second time between the program
protocol and paper and the social worker not returning calls we got turned
down agian for MR/DD. Cognitive is the only area he isn't delayed in, maybe
fine motor too. It's not like I want money or food stamps, but we may be
losing my husbands military insurance soon, which hardly pays visits, but
it's better then nothing. And I was told by the employment comission that I
could have made trouble for my employer, but I was still seven months
pregnant at the time and had other things on my mind at the time, and after
my focus is on my family. I still run into these people and it wouldn't be
worth it, I would rather get the help we really need, but cannot get.

Susan Collins <susancollins@ <mailto:susancollins%40bellsouth.net>
bellsouth.net> wrote: CAP C isn't income dependant. My daughter has CAP C.
You have to qualify
on 3 of the 5 delays that are possible. This is where you have to really
think about where your child is developmentally. I think the areas where
delays need to be include behavioral, gross motor, fine motor, self help and
...maybe emotionally (or is that the same as behavioral??) or could it be
speech? If it is speech, he should qualify under gross motor, speech and my
guess fine motor since a lot of kids with SB struggle with fine motor
issues. Self help will be hard to get at his age as many 2 year olds are
totally dependent on their parents. Don't you have grounds to sue your
employer for firing you due to a family medical leave? Even if you get on
CAP MR/DD in many counties there are waiting lists that are years long.
Also look into Children's special health services, or is it Special
Children's Health Services? What area of NC are you in?
Susan

_____

From: sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com
[mailto:sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com] On
Behalf Of
kellie_moors
Sent: Friday, August 25, 2006 7:27 PM
To: sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com
Subject: [SBAofNC] Declined!!

I found out that my two year old had spina bifida when I was twenty
three weeks pregnant. And because I'm a nurse and proactive I had my
husband shipped off a mountian in Afghanistan and we traveled 1000
miles for the MOMs study. Well we were declined because the MRI said
he didn't have any nerve in his meningocele so he wouldn't benefit
from the surgery. Then my employer, declined to have me restart work
because I had been gone 5 weeks. My husband got out of the military
on disablity and we have since been declined by SSI two times, I
cannot get the SBA to call back, Medicaid was approved until he turned
one year. And because my husband doesn't work we have been struggling
with all the therapy appointments and my husband's own diagnosis. And
my other son is suffering 'what about me's. CAP MR/DD just turned us
down after we applied in may and their slots closed in june. But the
mental health case worker dropped the ball and never called. I called
a lawyer, but they aren't accepting new clients. I have taken all
tuesdays off of work for PT and speech but really cannot afford it.
WHAT NEXT? What do you apply for when you've been turned down by
everything? I'm going to try for CAPs C but I've been told we make to
much, I don't see how when I just making bills.

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


---------------------------------
All-new Yahoo! Mail - Fire up a more powerful email and get things done
faster.

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






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

--- In sbaofnc@yahoogroups.com, Kellie Moors <kellie_moors@...>
wrote:
>
> They told me if we don't qualify SSI and because that we didn't
qualify for that we didn't get medicaid,when I asked another way
they said a waiver program,but I've been turned down twice, and yes
I think the first time it was because he was so young, but this
second time between the program protocol and paper and the social
worker not returning calls we got turned down agian for MR/DD.
Cognitive is the only area he isn't delayed in, maybe fine motor
too.  It's not like I want money or food stamps, but we may be
losing my husbands military insurance soon, which hardly pays
visits, but it's better then nothing.  And I was told by the
employment comission that I could have made trouble for my employer,
but I was still seven months pregnant at the time and had other
things on my mind at the time, and after my focus is on my family.
I still run into these people and it wouldn't be worth it, I would
rather get the help we really need, but cannot get.
>
> Susan Collins <susancollins@...> wrote:          CAP C isn't
income dependant. My daughter has CAP C. You have to qualify
> on 3 of the 5 delays that are possible. This is where you have to
really
> think about where your child is developmentally. I think the areas
where
> delays need to be include behavioral, gross motor, fine motor,
self help and
> ...maybe emotionally (or is that the same as behavioral??) or
could it be
> speech? If it is speech, he should qualify under gross motor,
speech and my
> guess fine motor since a lot of kids with SB struggle with fine
motor
> issues. Self help will be hard to get at his age as many 2 year
olds are
> totally dependent on their parents. Don't you have grounds to sue
your
> employer for firing you due to a family medical leave? Even if you
get on
> CAP MR/DD in many counties there are waiting lists that are years
long.
> Also look into Children's special health services, or is it Special
> Children's Health Services? What area of NC are you in?
> Susan
>
> _____
>
> From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On
Behalf Of
> kellie_moors
> Sent: Friday, August 25, 2006 7:27 PM
> To: sbaofnc@yahoogroups.com
> Subject: [SBAofNC] Declined!!
>
> I found out that my two year old had spina bifida when I was
twenty
> three weeks pregnant. And because I'm a nurse and proactive I had
my
> husband shipped off a mountian in Afghanistan and we traveled 1000
> miles for the MOMs study. Well we were declined because the MRI
said
> he didn't have any nerve in his meningocele so he wouldn't benefit
> from the surgery. Then my employer, declined to have me restart
work
> because I had been gone 5 weeks. My husband got out of the
military
> on disablity and we have since been declined by SSI two times, I
> cannot get the SBA to call back, Medicaid was approved until he
turned
> one year. And because my husband doesn't work we have been
struggling
> with all the therapy appointments and my husband's own diagnosis.
And
> my other son is suffering 'what about me's. CAP MR/DD just turned
us
> down after we applied in may and their slots closed in june. But
the
> mental health case worker dropped the ball and never called. I
called
> a lawyer, but they aren't accepting new clients. I have taken all
> tuesdays off of work for PT and speech but really cannot afford
it.
> WHAT NEXT? What do you apply for when you've been turned down by
> everything? I'm going to try for CAPs C but I've been told we make
to
> much, I don't see how when I just making bills.
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
> ---------------------------------
>  All-new Yahoo! Mail - Fire up a more powerful email and get
things done faster.
>
> [Non-text portions of this message have been removed]
>

They told me if we don't qualify SSI and because that we didn't qualify for that
we didn't get medicaid,when I asked another way they said a waiver program,but
I've been turned down twice, and yes I think the first time it was because he
was so young, but this second time between the program protocol and paper and
the social worker not returning calls we got turned down agian for MR/DD. 
Cognitive is the only area he isn't delayed in, maybe fine motor too.  It's not
like I want money or food stamps, but we may be losing my husbands military
insurance soon, which hardly pays visits, but it's better then nothing.  And I
was told by the employment comission that I could have made trouble for my
employer, but I was still seven months pregnant at the time and had other things
on my mind at the time, and after my focus is on my family.  I still run into
these people and it wouldn't be worth it, I would rather get the help we really
need, but cannot get.

Susan Collins <susancollins@...> wrote:          CAP C isn't income
dependant. My daughter has CAP C. You have to qualify
on 3 of the 5 delays that are possible. This is where you have to really
think about where your child is developmentally. I think the areas where
delays need to be include behavioral, gross motor, fine motor, self help and
...maybe emotionally (or is that the same as behavioral??) or could it be
speech? If it is speech, he should qualify under gross motor, speech and my
guess fine motor since a lot of kids with SB struggle with fine motor
issues. Self help will be hard to get at his age as many 2 year olds are
totally dependent on their parents. Don't you have grounds to sue your
employer for firing you due to a family medical leave? Even if you get on
CAP MR/DD in many counties there are waiting lists that are years long.
Also look into Children's special health services, or is it Special
Children's Health Services? What area of NC are you in?
Susan

_____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
kellie_moors
Sent: Friday, August 25, 2006 7:27 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] Declined!!

I found out that my two year old had spina bifida when I was twenty
three weeks pregnant. And because I'm a nurse and proactive I had my
husband shipped off a mountian in Afghanistan and we traveled 1000
miles for the MOMs study. Well we were declined because the MRI said
he didn't have any nerve in his meningocele so he wouldn't benefit
from the surgery. Then my employer, declined to have me restart work
because I had been gone 5 weeks. My husband got out of the military
on disablity and we have since been declined by SSI two times, I
cannot get the SBA to call back, Medicaid was approved until he turned
one year. And because my husband doesn't work we have been struggling
with all the therapy appointments and my husband's own diagnosis. And
my other son is suffering 'what about me's. CAP MR/DD just turned us
down after we applied in may and their slots closed in june. But the
mental health case worker dropped the ball and never called. I called
a lawyer, but they aren't accepting new clients. I have taken all
tuesdays off of work for PT and speech but really cannot afford it.
WHAT NEXT? What do you apply for when you've been turned down by
everything? I'm going to try for CAPs C but I've been told we make to
much, I don't see how when I just making bills.

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






---------------------------------
  All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.

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

CAP C isn't income dependant.  My daughter has CAP C.  You have to qualify
on 3 of the 5 delays that are possible.  This is where you have to really
think about where your child is developmentally.  I think the areas where
delays need to be include behavioral, gross motor, fine motor, self help and
...maybe emotionally (or is that the same as behavioral??) or could it be
speech?  If it is speech, he should qualify under gross motor, speech and my
guess fine motor since a lot of kids with SB struggle with fine motor
issues.  Self help will be hard to get at his age as many 2 year olds are
totally dependent on their parents.  Don't you have grounds to sue your
employer for firing you due to a family medical leave?  Even if you get on
CAP MR/DD in many counties there are waiting lists that are years long.
Also look into Children's special health services, or is it Special
Children's Health Services?  What area of NC are you in?
Susan

   _____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
kellie_moors
Sent: Friday, August 25, 2006 7:27 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] Declined!!



I found out that my two year old had spina bifida when I was twenty
three weeks pregnant. And because I'm a nurse and proactive I had my
husband shipped off a mountian in Afghanistan and we traveled 1000
miles for the MOMs study. Well we were declined because the MRI said
he didn't have any nerve in his meningocele so he wouldn't benefit
from the surgery. Then my employer, declined to have me restart work
because I had been gone 5 weeks. My husband got out of the military
on disablity and we have since been declined by SSI two times, I
cannot get the SBA to call back, Medicaid was approved until he turned
one year. And because my husband doesn't work we have been struggling
with all the therapy appointments and my husband's own diagnosis. And
my other son is suffering 'what about me's. CAP MR/DD just turned us
down after we applied in may and their slots closed in june. But the
mental health case worker dropped the ball and never called. I called
a lawyer, but they aren't accepting new clients. I have taken all
tuesdays off of work for PT and speech but really cannot afford it.
WHAT NEXT? What do you apply for when you've been turned down by
everything? I'm going to try for CAPs C but I've been told we make to
much, I don't see how when I just making bills.






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

I found out that my two year old had spina bifida when I was twenty
three weeks pregnant.  And because I'm a nurse and proactive I had my
husband shipped off a mountian in Afghanistan and we traveled 1000
miles for the MOMs study.  Well we were declined because the MRI said
he didn't have any nerve in his meningocele so he wouldn't benefit
from the surgery.  Then my employer, declined  to have me restart work
because I had been gone 5 weeks.  My husband got out of the military
on disablity and we have since been declined by SSI two times, I
cannot get the SBA to call back, Medicaid was approved until he turned
one year. And because my husband doesn't work we have been struggling
with all the therapy appointments and my husband's own diagnosis. And
my other son is suffering 'what about me's.  CAP MR/DD just turned us
down after we applied in may and their slots closed in june. But the
mental health case worker dropped the ball and never called.  I called
a lawyer, but they aren't accepting new clients.  I have taken all
tuesdays off of work for PT and speech but really cannot afford it.
WHAT NEXT?  What do you apply for when you've been turned down by
everything? I'm going to try for CAPs C but I've been told we make to
much, I don't see how when I just making bills.

Rita,  There have been many women who were born with spina bifida and who
have had successful pregnancies.  I would say that your first step would be
to find a neurosurgeon experienced in spina bifida (there are a few in NC)
and have a good review of your condition at this time.  That person can
then refer you to a OB who could work with you on your fertility issues.
Spina bifida does not include infertility as part of the condition, but may
require special attention during a pregnancy - kidneys, bladder, spine,
modified ambulation - Studies have been published and usually there are
presentation during the annual conference on the subject.  SBAA may have a
position paper at this time, I am not sure. But they do have a great
Medical Advisory Board who are resources.
Duke has a Myelodysplasia clinic coordinator who could talk to you about
resources - Crista Walters 919 681-5456
Joanne


Joanne Mackey, RN, MSN, CPNP
Duke University Medical Center
Division of Medical Genetics
(919)681-1945

"The information contained in this electronic mail transmission contains
confidential information belonging to the sender that is legally
privileged.  This information is intended only for the use of the
individual or entity named above.  The authorized recipient of this
information is prohibited from disseminating, distributing, or copying this
information.  If you have received this information in error please delete
this message, any attachments, and all copies and backups from your
computer and notify the sender immediately by replying to this message or
call 919.668-1100 or 1.800.MED-DUKE."



                       "Rita Connelly
                       (Ed - husband)"          To:       sbaofnc@yahoogroups.com
                       <lacyrose@carolin        cc:
                       a.rr.com>                Subject:  [SBAofNC] Spina Bifida
and Pregnancy
                       Sent by:
                       sbaofnc@yahoogrou
                       ps.com


                       08/20/2006 04:36
                       PM
                       Please respond to
                       sbaofnc






Hello all.  I am new to the group.  I have been researching for years
people with SB getting and being pregnant.

I went through infertility treatments with my husband about 6 years
ago.  I had been doing inseminations when I started to get extreme
pain near my left ovary.  My doctor thought laparoscopy was the next
step.  Well, he did not do appropriate research into my disability
and aborted the laporoscopy in the middle of the procedure.  I have a
very mild form of SB (paralyzed from the ankles to my toes), but
although appearing normal on the outside, my spine curves a bit
forward torward the end of my spine.

I have had infertility and pain ever since and have not heard of
anyone wanting to operate since.  That is, until I moved to
Charlotte.  I went to urgent care the other day with severe pain on
the left side and the doctor thought my doctor was crazy and that
they would just have to move me to an appropriate position to do the
surgery.  He said he thinks I was never worked up enough.

This distresses me.  Almost 12 years after having wanted to become
pregnant, I am finding this out now.  We have successfully adopted a
little girl from China and we love her so very much.  Adoption is my
life now, but I have never been able to close that book of my life
because I think I had a crappy doctor.

The only research I can find on the internet when I search Spina
Bifida and pregnancy is if you are pregnant and have a child with
Spina Bifida.  This is driving me nuts.

I am looking for doctors with experience in SB and pregnancy as well
as perhaps others who have become pregnant.

I would greatly appreciate any information I can get.

Rita







Yahoo! Groups Links

Hello all.  I am new to the group.  I have been researching for years
people with SB getting and being pregnant.

I went through infertility treatments with my husband about 6 years
ago.  I had been doing inseminations when I started to get extreme
pain near my left ovary.  My doctor thought laparoscopy was the next
step.  Well, he did not do appropriate research into my disability
and aborted the laporoscopy in the middle of the procedure.  I have a
very mild form of SB (paralyzed from the ankles to my toes), but
although appearing normal on the outside, my spine curves a bit
forward torward the end of my spine.

I have had infertility and pain ever since and have not heard of
anyone wanting to operate since.  That is, until I moved to
Charlotte.  I went to urgent care the other day with severe pain on
the left side and the doctor thought my doctor was crazy and that
they would just have to move me to an appropriate position to do the
surgery.  He said he thinks I was never worked up enough.

This distresses me.  Almost 12 years after having wanted to become
pregnant, I am finding this out now.  We have successfully adopted a
little girl from China and we love her so very much.  Adoption is my
life now, but I have never been able to close that book of my life
because I think I had a crappy doctor.

The only research I can find on the internet when I search Spina
Bifida and pregnancy is if you are pregnant and have a child with
Spina Bifida.  This is driving me nuts.

I am looking for doctors with experience in SB and pregnancy as well
as perhaps others who have become pregnant.

I would greatly appreciate any information I can get.

Rita

--- In sbaofnc@yahoogroups.com, "Mari Pedersen" <mpedersen@...>
wrote:
>
> Hi,
>
> My son has SB, he is 7.5. He is starting to realize his
limitations too and
> becoming more aware of how he can't play regular sports.
>
> Mari
>
> -----Original Message-----
> From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On
Behalf Of
> alfredlyons
> Sent: Friday, August 18, 2006 11:19 PM
> To: sbaofnc@yahoogroups.com
> Subject: [SBAofNC] New To Asheville
>
> Hi Friends!
>
  our
> 7yo "Ana" is really starting to notice differences>
> Thanks!
>
> Al & Karen Lyons
> alfredlyons@...
> 828.335.9900
>
Hi Al & Karen, Mari,

I'm one of those guys that grew to adulthood with SB. I'll be 43 in
December.

I remember when I first noticed I was different. I was about the
same age as your children. I knew I walked with braces, but it never
really got in my head that something might be wrong or different.
Then one day I was walking into school and I saw my reflection in
the glass of the door. Don't know why I'd never noticed it before.
But, anyway, I was stunned. No wonder kids thought I was strange and
made fun of me.

Fortunately, at that early age my folks were very supportive of me
and any efforts I made to overcome my disability. When I learned to
speak I told my folks I'd learn to walk. They said I could do if I
wanted to. I did. The doctors still don't understand it today. My
orthopedist says I break every rule concerning walking that he knows.

My parents support changed as I got older and caused a lot of
confusion for me.

I think one of the best things a parent can do is strive to improve
their child's self image and be consistent.

I've learned that if I feel good about me, others will follow along.
I learned this the hard way. My folks never instilled in me a good
self image. I spent a lot of years--especially in my teens--trying
to not be handicapped. Silly, but I did. I thought if I could just
not be handicapped I'd feel better.

Finally, I realized it is what it is and I made the best of it. I
did things no one thought possible.

I learned to drive using hand controls at the age of 19. I studied
martial arts for three years from the age of 22 to 25.

I began working out in a gym--in 4 months time I increased my bench
press from 95 lbs to 205 lbs.

After various jobs in different fields, at the age of 28, I went to
work for a Fortune 500 company making more money than anyone in my
immediate family had ever made. Did that for ten years, until I
finally had to go on disability due to some problems related to SB.

I've spent the last 4 or 5 years recovering from some health issues
and may soon be back in the workforce. I have a job offer from a
friend who is unconcerned with the fact that my disability may cause
me to miss work at times.

I'm currently perusing a career as a novelist. Something I can do
from home and not have to worry about my health so much.

Children and adults may have limitations, but they aren't
limitations themselves. Something I had to learn on my own because
no one ever bothered to tell me.

If we teach our kids this, I think they'll be alright and overcome
SB. Will they struggle and have difficult times? Absolutely. I still
do. I'm not going to be able to go to church this morning because
I'm not feeling so great. Guess I didn't get my meds in me early
enough. I'll feel better later this afternoon and attend this
evening's service. The struggles and difficulties are not the end of
the world, not even a good start to the end of the world.

I'm gonna shut up now. I set out to write a simple note of
encouragement and I've about written a novel.

Can't help it. I'm a writer.

Hopefully, I've been an encouragement.

Todd Greene
http://www.toddmichaelgreene.com
http://anewnovelistsjourney.blogspot.com
http://messagesfromtheasylum.blogspot.com

Hi,

My son has SB, he is 7.5. He is starting to realize his limitations too and
becoming more aware of how he can't play regular sports. We live south of
Charlotte in Indian Trail.

Mari

-----Original Message-----
From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
alfredlyons
Sent: Friday, August 18, 2006 11:19 PM
To: sbaofnc@yahoogroups.com
Subject: {Spam} [SBAofNC] New To Asheville

Hi Friends!

We are new to Asheville, with our 7yo with Spina Bifida. Interested in
meeting local families, especially children of similar age, as our
7yo "Ana" is really starting to notice differences and would like to
meet others in her peer group affected by SB.

Thanks!

Al & Karen Lyons
alfredlyons@...
828.335.9900






Yahoo! Groups Links

Hi Friends!

We are new to Asheville, with our 7yo with Spina Bifida. Interested in
meeting local families, especially children of similar age, as our
7yo "Ana" is really starting to notice differences and would like to
meet others in her peer group affected by SB.

Thanks!

Al & Karen Lyons
alfredlyons@...
828.335.9900

Research Articles Online - Online Resource Now
Updated!

SBA National Office has just updated the results of a
quarterly scientific publication search on Spina
Bifida and related topics on the web in Research
Articles Online.  This new Resource Center section
features highlights of research articles on topics
that are most frequently requested by National
Resource Center patrons.


http://www.sbaa.org/site/PageServer?pagename=research_articles_main


__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

It's Not Too Late - Visit www.sbaa.org

To Register for SBA's Annual Conference & SAVE

  June 25-28, 2006 in Atlanta, Georgia

Register Now! Reduced Early Bird Rates END JUNE 15!

This is what's happening at SBA's Annual Conference:

SUNDAY, JUNE 25
6:30 pm - 8:00 pm - Opening Night Reception sponsored
by SBA
- A Day at the Circus - Fun for kids from 8 to 80!
Visit with the conference exhibitors and meet old and
new friends.



MONDAY, JUNE 26
8:45 am - 5:00 pm - Kids!Camp

9:00 am - 12:00 pm - Conference Plenary Session -
Challenging Issues in Spina Bifida Care in Adolescents
and Adults
-- Leaders in the disciplines of urology, psychology,
pediatrics, and childhood development address the
issues that concern adults living with Spina Bifida
and parents of children and adolescents alike.

12:30 pm - 2:00 pm - Exhibit Hall Luncheon - Sponsored
by Mentor Corporation & SBA

2:15 pm - 5:00 pm - Conference Sessions



TUESDAY, JUNE 27
8:45 am - 5:00 pm - Kids!Camp

9:00 am - 4:45 pm - Conference Sessions

7:00 pm - 10:00 pm - Teen Dance - Teens look forward
to this night of music and fun all year!

8:00 pm - 11:00 pm - Adult Casino Night - An evening
of fun, food, and games for adults with Spina Bifida
and their and their partners or professional aides.



WEDNESDAY, JUNE 28
8:45 am - 5:00 pm - Kids!Camp

9:00 am - 11:45 pm - Conference Sessions

12:00 pm - 2:30 pm - Celebration Luncheon with Keynote
Speaker World-Class Athlete & Spina Bifida Advocate
Jean Driscoll

2:45 pm - 4:15 pm - Conference Sessions

7:15 pm - 9:00 pm - Town Hall Meeting (Open to all
Stakeholders of SBA) - Our Spina Bifida Association
community will gather together to get answers to
questions, share ideas, celebrate what's working, and
explore ways to make things work even better.

Register Online Now!

Pre-Conference Events

SATURDAY, JUNE 24
12:00 pm - 5:30 pm - Group Member Days - Positioning
Your Organization to Succeed in Challenging Times

SUNDAY, JUNE 25
8:00 am - 5:00 pm - Group Member Days - Positioning
Your Organization to Succeed in Challenging Times

8:30 am - 5:00 pm - NHPC Education Day: Applying
Outcomes-Oriented Research - Sponsored by UroMed

10:00 am - 5:00 pm - Adult Day: Living Well with Spina
Bifida - Sponsored by Astra Tech



Register Online NOW! Visit www.sbaa.org



__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

Register at www.sbaa.org and SAVE $60

We're Extending the Low "Early Bird" Registration
Rates for SBA's Annual Conference through JUNE 15!

You can stretch your travel budget a little further!

Reduced rates are just one good reason to go to SBA's
Annual Conference in Atlanta on June 25-28!

Register for SBA's Annual Conference.

Need some more good reasons? There are plenty!

Unparalleled educational sessions. Whether you're a
parent or an adult living with Spina Bifida, you'll
learn the latest medical advances and practical
recommendations to improve your quality of life.

Kids!Camp where kids with Spina Bifida can just be
kids. This year there will be basketball, "mad
science," rock climbing, arts and crafts AND a trip to
the fabulous Georgia Aquarium.

A day-long program just for adults with Spina Bifida.
All day Sunday, June 25 will be dedicated to the
challenges and joys of living with Spina Bifida. And
don't miss Adult Casino Night on Tuesday, June 27!

Atlanta is a fun-filled city with lots to do for young
and old. The CNN Center, the Atlanta Braves, the World
of Coca-Cola, world-class shopping and much, much
more.

Sign up today and save $60 on every person who
registers to attend!

Learn more about SBA’s 33nd Annual Conference.

This offer is only good until June 15!

Register at www.sbaa.org

__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com