Sandi in N. Cali

[Guest guest]

Definately go through the Stanford docs. I had some insurance issues

before my ectomy in Jan. and the DAY BEFORE I was scheduled the

insurance company denied me because they had not had time to review

my case. I was on the phone with them kicking, screaming and crying

(all while in the hallway at the hospital in Pittsburgh - 10 hours

away) all to no avail. The scheduler at the surgeons office called

and got me approved within an hour!! They have some kind of magic

buttons to push or something.

Stanford has a vested interest in taking on 's case so let

them go to it...

On a different note, with the (cranial) malformation thing - about a

month ago there was an episode of 'Extreme Makeover - Home' that

helped a family in the central plains (montana maybe) that had that

same condition. The mom of the family has a website and is a real

advocate. Unfortunately, all 3 of her children inherited it from her.

Might be worth looking into, they had information about her website

and I think posted it at the end of the show.

Sorry to hear that little man has to go under again. Keep us posted.

He is in my prayers.

- in NC

[Guest guest]

Yes,

I would like to get involved with starting a foundation to raise money for research

for achalasia and also to bring attention to this disease. Until I found this

group to talk to, all I could find were the generic articles on the website. My

email is jan.dolph@...

Jan Dolph – Portland, OR

Sandi in N.

Cali

so the different

foundations you looked at, did the doctors actually

start them or where they just on the 'board' in an advisory capacity?

The idea was thrown out to contact Dr. Rice or Dr. Patti or one of

the other really well known surgeons but we didn't have our own

internals worked out. My thought was to at least have a 'board' with

a mission statement and basic plan of action before contacting one of

these very busy surgeons.

I think one thing we lacked was one person to really 'take charge'.

has her website, I have small kids - although I'm now off for

the summer, and other people have their things. We never had one

person who would just stand up and say - OK, here's what we are going

to do.

Is the email you use here your best one? I can add you to the

achalasia workgroup site. Some of these discussions are best held

there and that way anyone else who wants to 'stop in' can feel free

to do so.

If anyone is interested in helping, let me know and I'll add you to

the group. it is in NO WAY meant to conflict with this one. It's

purpose will be beyond day to day support and more into the bigger

picture.

Sandi - send me your best up to date email, and I'll add you in.

- in NC

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