awareness

[Guest guest]

Rick,

We always took everywhere with us, almost from the time he was

born. He had a sister in Jr. High and a brother in High School and he went

to all their programs, as well as band concerts and organ recitals, etc. We

have always been so proud of him, and I still am. I tell him that every day

too. We just never made a big thing of the DS. He has always just been

our/my son. People who are insensitive enough to ask dumb questions of

strangers don't deserve answers. Actually, I have never had that happen.

The ones that bother me are the people who tell me what a wonderful mother I

am and how much patience I must have. He's my son, what else would I do? And

it would be nice if I did have patience. Jessie

[Guest guest]

In a message dated 10/3/00 12:15:36 PM Central Daylight Time,

rdill@... writes:

<< Jessie,

In whose eyes are the questions 'dumb'. The strangers are interested.

Shouldn't they be allowed to be educated.

By and large we often view the world from our own sense of privacy. We

aren't forward in talking to handicapped people about their handicap any

more than we are comfortable with approaching strangers. Jan has taught

the lesson on this. She will approach a person in a wheel chair or on

crutches with simple meaningful questions. Usually she gets very

patient answers and learns from others with handicaps. Asking isn't

necessarily insensitive and 'dumb' may be asking for answers.

I think it is important to educate people who praise our patience or

support that our children are loved and not burdens. Once in a while we

can gracefully accept praise as well. Some is deserved by most parents

with DS.

Rick

>>

Rick,

In general I agree with what you are saying but, there are some people out

there that are nosy or rude or feel that the world should fit their idea of

how things should go. I'm one of the first to educate others about

disabilities and accepting others. I certainly don't assume that others are

trying to be rude when they look or even sometimes stare. I smile at them and

start up conversations whenever possible.

My foster son has some quite intense behavioral issues but it doesn't stop me

or my family from including him in our community or setting high expectations

for him. I have met many wonderful people in our community because of my

foster son but I also won't accept public officials, doctors, or other

professionals that I come into contact with remaining ignorant about

disabilities. I don't throw one liners out to people that I'm dealing with

but sometimes when you are venting to a group of friends they sure sound

good.

Karyn

[Guest guest]

Jessie,

In whose eyes are the questions 'dumb'. The strangers are interested.

Shouldn't they be allowed to be educated.

By and large we often view the world from our own sense of privacy. We

aren't forward in talking to handicapped people about their handicap any

more than we are comfortable with approaching strangers. Jan has taught

the lesson on this. She will approach a person in a wheel chair or on

crutches with simple meaningful questions. Usually she gets very

patient answers and learns from others with handicaps. Asking isn't

necessarily insensitive and 'dumb' may be asking for answers.

I think it is important to educate people who praise our patience or

support that our children are loved and not burdens. Once in a while we

can gracefully accept praise as well. Some is deserved by most parents

with DS.

Rick

JB66111@... wrote:

>

> [snip] People who are insensitive enough to ask dumb questions of

> strangers don't deserve answers. Actually, I have never had that happen.

> The ones that bother me are the people who tell me what a wonderful mother I

> am and how much patience I must have. He's my son, what else would I do? And

> it would be nice if I did have patience. Jessie

[Guest guest]

is the tag along little brother as well. Just tonight, I get off

work, pick Katey up and drive her to cheerleading practice. Then I pick up

and head back to practice and let play on the playground. An

older kid (grade 4 or 5??) came up to me and asked if he attended Round Hill

(he does) then asked " What is wrong with him? " . I told him he has down

syndrome and apraxia and he said is that why he can't talk right? Then he

asked if he had mental problems and I said you mean is he mentally retarded?

He said yes and I replied yes...then he was off on the play equipment with

and the other 3 boys that were there. How honest his questions

were!!!...I was happy he asked.

Then we went to grab a pizza before heading off to TJ's game. Some woman

asked what his name is..he signed M-A-T-T-H-E-W...lol. I told her he

just spelled out his name in sign language..she was amazed

Then off to the game. TJ did not play in the varsity game on Friday but he

played almost the entire JV game tonight. There is a small crowd at the JV

games. Anyway, goes up to TJ's best friend and greats him by

name..then off to say hi to a female friend of TJ's and also greets her by

name. The guy went on vacation with us..the girl we see just a few times a

year...but he remembered

Then another friend of TJ's came up and asked to give him a high 5

and he did. Then walked down to where the cheerleaders were and

stood there looking at them. Later on, he asked where Bear was (what he

calls Katey)....he then asked (in sign) if he could go play with Bear. I

said no and he slowly walks backwards away from me...until he turned around

and thought he made his escape!!! Meanwhile, not watching him..I'm watching

other teenagers watch him. Kids are just amazed and curious. I watched them

laugh as he attemped his escape. I followed him to where Katey was (behind

the bleachers with her group of friends) and handed him over to her.

I sometimes feel people are examing us because of ....mostly out of

curiousity. I get so mad at when he misbehaves in public..I've been

known to whisper in his ear " Straighten up..you are suppose to be an

ambassador for Down syndrome and look what you are showing them!:...lol.

Anyway...I am happy when people ask me questions and I dont mind answering.

I also love when someone comes up and tells me they have a friend or a

relative with Down syndrome and relate their stories to me. The more we make

others aware, the better .

[Guest guest]

I have found that people who ask questions genuinely are interested and even

if they make a faux pas, they deserve a polite and interested answer. Those

who say things just to be mean, or to show that their child is better

because he or she does not have a disability or those who make stupid

comments get what they deserve, depending on the kind of day I'm having.

Mongoloid, as I have said many times, is a slur. It is racial in origin.

Dr. Down (who coined the term) believed that Asians were an evolutionary

throwback and since kids with DS have features that " appeared " Asian to him,

he thought this term justified. I don't like the N word for blacks, the K

word for Jewish people, or the S word for Latinos. I always say something

if I hear anyone use any of those terms. I find Mongoloid unacceptable in

the same way. Racial slurs or slurs for folks with disabilities are not

tolerated by me.

Elaine

Re: Awareness

> Jessie,

>

> In whose eyes are the questions 'dumb'. The strangers are interested.

> Shouldn't they be allowed to be educated.

>

> By and large we often view the world from our own sense of privacy. We

> aren't forward in talking to handicapped people about their handicap any

> more than we are comfortable with approaching strangers. Jan has taught

> the lesson on this. She will approach a person in a wheel chair or on

> crutches with simple meaningful questions. Usually she gets very

> patient answers and learns from others with handicaps. Asking isn't

> necessarily insensitive and 'dumb' may be asking for answers.

>

> I think it is important to educate people who praise our patience or

> support that our children are loved and not burdens. Once in a while we

> can gracefully accept praise as well. Some is deserved by most parents

> with DS.

>

> Rick

>

> JB66111@... wrote:

> >

> > [snip] People who are insensitive enough to ask dumb questions of

> > strangers don't deserve answers. Actually, I have never had that

happen.

> > The ones that bother me are the people who tell me what a wonderful

mother I

> > am and how much patience I must have. He's my son, what else would I

do? And

> > it would be nice if I did have patience. Jessie

>

>

>

[Guest guest]

I think that some people who use the " M word " truly don't realize that it

is inappropriate. Bill is in Seminary here in Memphis and during a lecture

a Professor of his, when talking about discouraging things that can happen

to a family, used this word. This is a very sweet and kind older man, who

is the pastor of a very large church here in town. I'm quite sure he would

never use the " n word " or any other racial slur...it is simply the term I'm

sure was used when he was growing up and he has never had the opportunity to

be educated otherwise. Bill went up to him after class, told him about

and explained that it is an outdated term and can be offensive. He

apologized and thanked Bill and said that a person is never too old to

learn. I mean it does sort of make your skin crawl when you hear it, but it

is our job, as parents, to educate those who truly don't know any better.

And who are not purposely trying to be offensive. I think so any way!

God Bless

-mommy to (2 DS) and Caitlin (4)

[Guest guest]

c1ndysue1@... wrote:

..I've

been

known to whisper in his ear " Straighten up..you are suppose to be an

ambassador for Down syndrome and look what you are showing them!

awww that is so darn cute!!! i have to remember that line..LOL

Arlene

[Guest guest]

Hugs to you Becki! And you are right - I am sure we all have stories. I have

mentioned before that Friendly's is Robbie's favorite place to eat. There are

several " regulars " that we run into there, and for awhile if we weren't seen

there at least once a week, the staff there would get concerned that Robbie was

back in the hospital. Talk about raising awareness - a bunch of mostly young

adults and teens working at Friendlys know all about JRA, Robbie's struggles,

medications and side affects! Over time we have actually become good friends

with one to the evening managers - and see her socially on different occasions

(she went to Robbie's kindergarden class as a surogate Grandmother on

Grandparents Day) - anyway, she recently switched to a different Friendly's - so

now we go to that one, and back to the old on on occasion too - now a whole

other Friendly's has gone through Robbie's flares with him since spring - so a

whole bunch of kids and a new, smaller group of " regulars " we have come to know

now know that KGAT. We wear our tshirts when we go there a lot. Anyway - a

lady that has gotten to know Robbie (another grandmother type - boy does he

charm them!) has a son who works at a Radio station who wants to do some kind of

fund raiser for JRA through the station & he wants to involve Friendly's. It is

in the very, very early stages of discussion - so I don't know if it even is

going to happen - but the Friendly's where my friend now works usually does a

Fundraiser for a different group every year - and a %of the profit goes to that

cause, they already have the one planned for this year (in the spring, I think)

- and the staff generally dress in something that reflects the cause that they

support -anyway, he has met Robbie and is interested in something to support JRA

for next year's fund raiser - so it may all just come together. (I am already

thinking about ordering T-shirts so that the staff could wear them if it all

comes together.) Anyway, a long ramble on what raising awareness can, and does

lead to.

The comments though go on - the " eater " comment really got to me Becki, as did

the others, but the eating thing because a couple of years ago, we had been

home, in Ohio visiting and Robbie was doing well, med levels low - looking fine

and healthy, and then, following a flare we were home a couple of months later,

pred dose high, etc, and my cousin -who knew what was going on, but not

completely understanding (how many times do we have to say what goes on with all

of this?) or just not thinking, looked at Robbie when he first walked in the

room and said " Well, you haven't missed a meal since you left here the last

time. " I couldn't believe it!

Well, better get some work done!

Hugs!

Val

In a message dated 1/7/2005 9:39:53 AM Eastern Standard Time,

Arthurnator@... writes:

>

>Hi,

>I just wanted to point out that it doesn't take a t-shirt,braclet or magnet

>to spread awareness.I'm sure everyone has their own stories to tell but here is

>a few of mine.

>A few months after diagnosis I was in Krogers and a couple college bag boys

>were makeing fun of arthritis.I got realy upset and said that there was nothing

>funny about arthritis.See that little boy,he was diagnosesd with juvenile

>rheumatoid arthritis at age 2 and has to take drugs that cause all kinds of

nasty

>side effects,too many to mention,drugs that will most likely cause ulcers and

>a shot of chemo every week.On top of the fact that he can barely walk and

>never runs or plays like other kids.

>Another time at the grocery store an older woman looked at and said he

>was mommas good little eater(the pred days).I told her no,he has juvenile

>rheumatoid arthritis and is on large doses of steroids and has been since he

was

>diagnosed at 2.Reply was, oh the poor baby.I have asthma and everytime they put

>me on steroids I just bloat up.Could have strangled the old biddy.

>And the one that gets them all is I buy Enbrel at Bi-Lo and everytime I go

>through the checkout with my grocery's they want to put it in a bag.I always

>tell them at $1400 I will just hang onto it myself.It never fails,the jaw drops

>and they ask what it is and what it's for and I tell them.

>I can't help but add this little thing about advertisement though.It goes a

>few years back but Robbins, would make car banners that said Kids Get

>Arthritis Too! and Robbin got asked ALOT,seems like people would even honk

>horns desperately trying to get her attention to ask about it.Not the safest

thing

>but got lots of attention.

>It's all about an individuals preferance and pocketbook.I wanted a magnet so

>had one made.Others might just want to buy some ribbon and make a pin.Some

>might want to have a bumper sticker made or have a t-shirt air brushed and

others

>want to pool money together to have 500 braclets made.Whats important is that

>we never sit in silence but keep educationg people about the kids.

>Hugs

>Becki and 6 systemic

>

>

>

[Guest guest]

Becki,

The sign still get's attention. I have a picture of my car with the sign

in the window somewhere lolol. I also have a Yellow ribbon magnet saying

support our troops and a pink ribbon with breast cancer awareness on it. In the

back

window there's red white and blue stars and a Eagle for freedom. When you

look at the stars you can see baby toys now lolol.

The Kroger store that I go to. Have people working there who are mentally

disadvantage but work harder than most people. They help out all the time.

Like yesterday. This one who knows me very well hollered at me and and

we

stopped talked to him. He said can I get her scooter to shop today?

said no today is a good day for me. He smiled and said go braves

another good day. told us if we need him to holler for him. This really say's

alot

to me that that sign helps. Most in this store really are friendly and home

people. Always asking how is doing and now how Jackie is doing. If I go

there alone they are asking where are those kids of your's lololol. I am very

impressed with this store that I drive past the one close to me just to go to

this one. I talk with the manager aometimes and Tell him when he asks if

theres anything he can help me with. I tell him yes sir PLEASE set the Big K

cola

down on a lower shelf for us women who are short lololol. Cause I have to

stack 2 12 packs of drinks and step up on that to get the drinks for myself

lololol he said ohhhhhhh your the one who is doing that I said yes sir and I

will

continue doing that til you fix it. lolol so far nothing has lowered those

drinks for me lolol.

Robbin

[Guest guest]

Forgot to say I got 3 of the AJAO shirts while in San Diego. I also wear

those around as well as too. Sometimes we will get dressed not knowing

what the other will be wearing and she will have her AJAO shirt on and I will

have mine on lololol.

My new daughter in law asked me the other day. Mom don't you need to change

your shirt remember Jackie spit up on that one. lololol. I said well I

changed the shirt but wanted to wear my other one. She didn't know I had more

than

1 shirt lololol.

Robbin

[Guest guest]

What's his email address?

---- Original message ----

>Date: Tue, 17 May 2005 13:50:00 -0000

>From: " avery52060 " <jackieavery@...>

>Subject: Awareness

>EOHarm

>

> (Director Farenheit 911) is going

> after the

> pharmaceutical companies in his next film. I

> emailed him a couple of

> times with my concerns about Thermisol and Autism

> and all of the

> political BS that surrounds it. I got no response.

> Maybe if we all

> email him he will think about stirring things up a

> bit. The more

> people that know about this tradedy the better. I

> have two son's that

> have been poisened by mercury and have Autism. I am

> very frustrated

> and don't know where to turn for help. I have just

> begun to read

> Kirby's book and it is effecting me tremendously.

> Thank you , I

> no longer feel crazy or alone on this journey in my

> life!

>

> ----------------------------------------------------

>

>

[Guest guest]

I first herd of this thing back at xmass time and emailed him then but have never gotten any reply either Hang in there I am some what new to all this too autism has only been our life for 3 yrs now

Awareness

(Director Farenheit 911) is going after the pharmaceutical companies in his next film. I emailed him a couple of times with my concerns about Thermisol and Autism and all of the political BS that surrounds it. I got no response. Maybe if we all email him he will think about stirring things up a bit. The more people that know about this tradedy the better. I have two son's that have been poisened by mercury and have Autism. I am very frustrated and don't know where to turn for help. I have just begun to read Kirby's book and it is effecting me tremendously. Thank you , I no longer feel crazy or alone on this journey in my life!

[Guest guest]

I have e-mailed a couple of times since I found out about the

film he is currently working on, " Sicko. " Most recently, right after

publication of " EOH. " I have never gotten a reply. I can't wait to see

" Sicko. "

www.michaelmoore.com <http://www.michaelmoore.com/>

Pamela

" Courage is doing what you're afraid to do. There can be no courage unless

you're scared. "

Eddie Rickenbacker, top US fighter ace, WWI

[Guest guest]

,

Sorry to " barge in, " but could you email me privately? I have, what

I believe to be, a good idea. Don't worry, it's legit!

Webster

jmiwebster@...

________________

-- In EOHarm , <brian@d...> wrote:

> What's his email address?

>

>

> ---- Original message ----

> >Date: Tue, 17 May 2005 13:50:00 -0000

> >From: " avery52060 " <jackieavery@d...>

> >Subject: Awareness

> >EOHarm

> >

> > (Director Farenheit 911) is going

> > after the

> > pharmaceutical companies in his next film. I

> > emailed him a couple of

> > times with my concerns about Thermisol and Autism

> > and all of the

> > political BS that surrounds it. I got no response.

> > Maybe if we all

> > email him he will think about stirring things up a

> > bit. The more

> > people that know about this tradedy the better. I

> > have two son's that

> > have been poisened by mercury and have Autism. I am

> > very frustrated

> > and don't know where to turn for help. I have just

> > begun to read

> > Kirby's book and it is effecting me tremendously.

> > Thank you , I

> > no longer feel crazy or alone on this journey in my

> > life!

> >

> > ----------------------------------------------------

> >

> >

[Guest guest]

well, hello-I have been trying to e-mail since F 9/11 came out

and of course-no response. Also frequently his mailbox is full and won't

take e-mails. I seriously doubt e-mails are the way to go-in trying to

reach him What we need is someone who knows someone who knows someone else

that knows him. personally. or at least a better way to contact him.

Re: awareness

> I have e-mailed a couple of times since I found out about

the

> film he is currently working on, " Sicko. " Most recently, right after

> publication of " EOH. " I have never gotten a reply. I can't wait to see

> " Sicko. "

>

>

>

> www.michaelmoore.com <http://www.michaelmoore.com/>

>

>

>

>

>

>

>

> Pamela

>

>

>

>

>

> " Courage is doing what you're afraid to do. There can be no courage

unless

> you're scared. "

>

> Eddie Rickenbacker, top US fighter ace, WWI

>

>

>

>

>

>

>

>

[Guest guest]

I think you're more likely to get a favorable response from the guy that did Super Size Me.

Re: awareness> I have e-mailed a couple of times since I found out aboutthe> film he is currently working on, "Sicko." Most recently, right after> publication of "EOH." I have never gotten a reply. I can't wait to see> "Sicko.">>>> www.michaelmoore.com <http://www.michaelmoore.com/>>>>>>>>> Pamela>>>>>> "Courage is doing what you're afraid to do. There can be no courageunless> you're scared.">> Eddie Rickenbacker, top US fighter ace, WWI>>>>>>>>

[Guest guest]

hi jennifer,

thank god for a/c! the humidity lately has been a bit much

even though the actual temp outside is not so bad. it's great

that you are informing the public about this! lucas does have

a tendency to lift his shirt a lot for air circulation, i

guess?, and people have commented about his cast and now his

brace. right now lucas is in love with basketball shirts.

they have a lot of ventilation holes so it keeps him pretty cool.

deshea

---- Original message ----

>Date: Wed, 12 Jul 2006 13:54:07 -0000

>From: " jviv314 " <jviv314@...>

>Subject: awareness

>infantile scoliosis treatment

>

> Just wanted you all to know how many people ask

> about Jake's brace. We

> take him out without an overshirt (over the brace)

> because it is too

> hot/humid to put another shirt on top of his brace

> shirt and brace.

> People want to know if he's okay. Many people never

> knew scoliosis

> could occur in infants/small children. Also wanted

> to mention that a

> few people have asked where I got my pretty ISOP

> bracelet. So I've had

> a few opportunities to talk about early treatment to

> people other than

> family members.

>

> It feels good to make people aware, you know?

>

> One day at a time,

> & Jake

>

>

[Guest guest]

again....

h

awareness

Just wanted you all to know how many people ask about Jake's brace. We

take him out without an overshirt (over the brace) because it is too

hot/humid to put another shirt on top of his brace shirt and brace.

People want to know if he's okay. Many people never knew scoliosis

could occur in infants/small children. Also wanted to mention that a

few people have asked where I got my pretty ISOP bracelet. So I've had

a few opportunities to talk about early treatment to people other than

family members.

It feels good to make people aware, you know?

One day at a time,

& Jake

[Guest guest]

heather I would love to have some brochures. i am constantly told, " i have

scoliosis or my sister has scoliosis " ............and yes you guessed it they are

or were adolescents when they had problems with it. and people are amazed to

learn about infantile scoliosis.

just about to enter into this world of casting i am sure we will get lots of

questions. the brochures would be of great help.

thanks, tasha

heather hyatt <heather@...> wrote:

again....

h

awareness

Just wanted you all to know how many people ask about Jake's brace. We

take him out without an overshirt (over the brace) because it is too

hot/humid to put another shirt on top of his brace shirt and brace.

People want to know if he's okay. Many people never knew scoliosis

could occur in infants/small children. Also wanted to mention that a

few people have asked where I got my pretty ISOP bracelet. So I've had

a few opportunities to talk about early treatment to people other than

family members.

It feels good to make people aware, you know?

One day at a time,

& Jake

[Guest guest]

Tasha,

I'll toss some ISOP brochures in the mail to you Mon. a.m.

Thanks!

HRH

awareness

Just wanted you all to know how many people ask about Jake's brace. We

take him out without an overshirt (over the brace) because it is too

hot/humid to put another shirt on top of his brace shirt and brace.

People want to know if he's okay. Many people never knew scoliosis

could occur in infants/small children. Also wanted to mention that a

few people have asked where I got my pretty ISOP bracelet. So I've had

a few opportunities to talk about early treatment to people other than

family members.

It feels good to make people aware, you know?

One day at a time,

& Jake

[Guest guest]

Bill, please do add our community to the list... is there anything I can do for

our town, to let them be aware? Like could I put up an paper advertisement of

the NBIRR treating brain injured vets, with the contact info? anything to get

the word out? It took me a good searching to find HBOT for brain

injury...stephani

________________________________

From: Duncan <wduncan@...>

medicaid

Sent: Wednesday, October 14, 2009 5:00:03 PM

Subject: [ ] NBIRR Site Locations

 

We have a number of sites at various stages in Texas. Donna's closest

site in Dallas will probably be approved in the next round of approvals

in 3 weeks. We have a San facility, where you son was probably

treated, who is expected to join the effort.

Because the basic principle of NBIRR is to treat people within 1 hour of

home, we do have rural health care provisions. I did rural health care

in Congress for 10 years, and am very familiar with the challenges.

Even though you have a center next to your home, if they will not treat

your case, you can be thousands of miles. Remember, I had to go from

Virginia, with 10 hospital based HBOT clinics within driving distance of

my home, to New Orleans, all because of political, not scientific,

decisions by the UHMS regarding neurological treatment with HBOT.

So, for example, when I go to New Mexico next month, I am going to a

rural city of 10,000 people. We are doing a feasibility project there.

This NBIRR site will be under direction of Dr. Stoller, with a local

site PI. It is 150 miles from the nearest HBOT of any kind. We are

looking at bringing a 3 chamber medical-grade trailer to the site which

will permit them to treat NBIRR patients, diabetic foot wound patients,

etc. It is expected the trailer will remain on station for 60 days (the

length for the first 40 NBIRR treatments) and be moved to a second

location for 60 days, to return the following 60 days for NBIRR round 2.

There will be an attending nurse practitioner and medical doctor

supervising the site in the town.

That has already been discussed with the Governor's office in Texas and

with the State VA in California, who would likely purchase these mobile

HBOT units from State/Federal funds to permit their veterans to be

treated, as well as the others who need biological repair of their (name

the injury.)

So, Stephani, if you would like to have your community on that list, we

will work to make sure we get a mobile facility to you as quickly as

possible. This first feasibility study will be key. After that, we

will begin building these as quickly as funds permit. It takes 4 months

to complete one, about the same amount of time as a build out in a

building. However, they are up and running within 1 hour of arrival at

a site, and not subject to building code rules. (They are subject to

fire safety and oxygen/medgas rules).

The goal is to put HBOT into every community health center, satellite

veterans clinic, rural hospital, etc. Then the access problem will be

largely solved.

There are proper uses of portable chambers as well, with pressure

dictated by medical condition, not FDA-fiat. In the next NBIRR protocol

under development, the condition requires HBOT for the rest of the

patient's life, after they have been stabilized. This will create a

justification for a home-health- care payment by a third party payer for

a chamber as an item of durable medical equipment.

It is also feasible to have a portable chamber capable of achieving

study pressure, used under NBIRR, (Air with O2 by mask) when there is no

other treatment modality possible. This is not ideal, however, as the

need for patient supervision during that first 80 treatments is

demonstrated by well-known side effects as outlined in the patient

disclosure form. This also depends upon state law, physician comfort,

and other similar factors. This is just to point out that there are

indeed legitimate uses for home-based systems, especially when there are

chronic medical conditions that justify it (Chronic CO poisoning, MS,

Parkinsons, COPD, just to name a few.)

Bill Duncan

DR.

[Guest guest]

Sorry this was question for person in colorado. Where is your community.

________________________________

From: medicaid

medicaid

Sent: Wed Oct 14 18:57:05 2009

Subject: Re: [ ] awareness

Are you asking me how far we are from boulder? i checked mapquest i do not see

any town named boulder in texas.. was this question for someone else? stephani

________________________________

From: Duncan <wduncan@... <mailto:wduncan%40dc-strategy.com>

>

medicaid <mailto:medicaid%40>

Sent: Wednesday, October 14, 2009 6:28:55 PM

Subject: Re: [ ] awareness

How far are you from boulder.

____________ _________ _________ __

From: medicaid

medicaid

Sent: Wed Oct 14 17:58:25 2009

Subject: [ ] awareness

Bill, please do add our community to the list... is there anything I can do for

our town, to let them be aware? Like could I put up an paper advertisement of

the NBIRR treating brain injured vets, with the contact info? anything to get

the word out? It took me a good searching to find HBOT for brain

injury...stephani

____________ _________ _________ __

From: Duncan <wduncan@dc-strategy .com <mailto:wduncan% 40dc-strategy.

com> >

medicaid <mailto:medicaidfor hbot%40grou

ps.com>

Sent: Wednesday, October 14, 2009 5:00:03 PM

Subject: [ ] NBIRR Site Locations

We have a number of sites at various stages in Texas. Donna's closest

site in Dallas will probably be approved in the next round of approvals

in 3 weeks. We have a San facility, where you son was probably

treated, who is expected to join the effort.

Because the basic principle of NBIRR is to treat people within 1 hour of

home, we do have rural health care provisions. I did rural health care

in Congress for 10 years, and am very familiar with the challenges.

Even though you have a center next to your home, if they will not treat

your case, you can be thousands of miles. Remember, I had to go from

Virginia, with 10 hospital based HBOT clinics within driving distance of

my home, to New Orleans, all because of political, not scientific,

decisions by the UHMS regarding neurological treatment with HBOT.

So, for example, when I go to New Mexico next month, I am going to a

rural city of 10,000 people. We are doing a feasibility project there.

This NBIRR site will be under direction of Dr. Stoller, with a local

site PI. It is 150 miles from the nearest HBOT of any kind. We are

looking at bringing a 3 chamber medical-grade trailer to the site which

will permit them to treat NBIRR patients, diabetic foot wound patients,

etc. It is expected the trailer will remain on station for 60 days (the

length for the first 40 NBIRR treatments) and be moved to a second

location for 60 days, to return the following 60 days for NBIRR round 2.

There will be an attending nurse practitioner and medical doctor

supervising the site in the town.

That has already been discussed with the Governor's office in Texas and

with the State VA in California, who would likely purchase these mobile

HBOT units from State/Federal funds to permit their veterans to be

treated, as well as the others who need biological repair of their (name

the injury.)

So, Stephani, if you would like to have your community on that list, we

will work to make sure we get a mobile facility to you as quickly as

possible. This first feasibility study will be key. After that, we

will begin building these as quickly as funds permit. It takes 4 months

to complete one, about the same amount of time as a build out in a

building. However, they are up and running within 1 hour of arrival at

a site, and not subject to building code rules. (They are subject to

fire safety and oxygen/medgas rules).

The goal is to put HBOT into every community health center, satellite

veterans clinic, rural hospital, etc. Then the access problem will be

largely solved.

There are proper uses of portable chambers as well, with pressure

dictated by medical condition, not FDA-fiat. In the next NBIRR protocol

under development, the condition requires HBOT for the rest of the

patient's life, after they have been stabilized. This will create a

justification for a home-health- care payment by a third party payer for

a chamber as an item of durable medical equipment.

It is also feasible to have a portable chamber capable of achieving

study pressure, used under NBIRR, (Air with O2 by mask) when there is no

other treatment modality possible. This is not ideal, however, as the

need for patient supervision during that first 80 treatments is

demonstrated by well-known side effects as outlined in the patient

disclosure form. This also depends upon state law, physician comfort,

and other similar factors. This is just to point out that there are

indeed legitimate uses for home-based systems, especially when there are

chronic medical conditions that justify it (Chronic CO poisoning, MS,

Parkinsons, COPD, just to name a few.)

Bill Duncan

DR.

[Guest guest]

a,

I was just thinking about the blog button. I never heard anything else about when you mentioned it. I am going to your blog now to get it to put on my blog.

Does it direct you back to ISOP if you click on it?

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: a Ross <danceswiththesun@...>infantile scoliosis treatment Sent: Sun, January 9, 2011 3:44:41 PMSubject: Re: Awareness

Heidi,Don't forget that I have a ISOP blog button (and the code for it) on the left hand side of my blog. Feel free to use and repost on your own sites.aDoc's Mommyhttp://seemorganacook.blogspot.com

From: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Sun, January 9, 2011 4:28:14 PMSubject: Awareness

Hey Everyone!I'm very proud of my little blog post today because it's partially about our connection here on CAST- there's a little giveaway of a Moby Wrap baby carrier from Jenn Leggett's website and I posted her video about Cole's Story- which is SO good! If anyone can use the wrap or would like it to give as a shower gift, just leave a comment under today's post on www.GirltoMom.com to be entered in the drawing.Trying to spread awareness and get those baby's curves checked! : )

Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)

[Guest guest]

I love it! Just added it to the end of my post responding to a hater- I mean, really, when a mom has just been back from the hospital with her child less than a week? Now I think I should be able to figure this out...I'm not on blogger.com, is this the same as a widget, a? Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: a Ross <danceswiththesun@...>infantile scoliosis treatment Sent: Sun, January 9, 2011 1:44:41 PMSubject: Re: Awareness

Heidi,Don't forget that I have a ISOP blog button (and the code for it) on the left hand side of my blog. Feel free to use and repost on your own sites.aDoc's Mommyhttp://seemorganacook.blogspot.comFrom: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Sun, January 9, 2011 4:28:14 PMSubject: Awareness

Hey Everyone!I'm very proud of my little blog post today because it's partially about our connection here on CAST- there's a little giveaway of a Moby Wrap baby carrier from Jenn Leggett's website and I posted her video about Cole's Story- which is SO good! If anyone can use the wrap or would like it to give as a shower gift, just leave a comment under today's post on www.GirltoMom.com to be entered in the drawing.Trying to spread awareness and get those baby's curves checked! : ) Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)

[Guest guest]

yes. It's a Java widget converted to HTML.From: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Sun, January 9, 2011 6:32:16 PMSubject: Re: Awareness

I love it! Just added it to the end of my post responding to a hater- I mean, really, when a mom has just been back from the hospital with her child less than a week? Now I think I should be able to figure this out...I'm not on blogger.com, is this the same as a widget, a? Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: a Ross <danceswiththesun@...>infantile scoliosis treatment Sent: Sun, January 9, 2011 1:44:41 PMSubject: Re: Awareness

Heidi,Don't forget that I have a ISOP blog button (and the code for it) on the left hand side of my blog. Feel free to use and repost on your own sites.aDoc's Mommyhttp://seemorganacook.blogspot.comFrom: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Sun, January 9, 2011 4:28:14 PMSubject: Awareness

Hey Everyone!I'm very proud of my little blog post today because it's partially about our connection here on CAST- there's a little giveaway of a Moby Wrap baby carrier from Jenn Leggett's website and I posted her video about Cole's Story- which is SO good! If anyone can use the wrap or would like it to give as a shower gift, just leave a comment under today's post on www.GirltoMom.com to be entered in the drawing.Trying to spread awareness and get those baby's curves checked! : ) Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)