Hi Sherry,
>Does anyone know where I can get a copy of Michigan's state standards
>and guidelines of medical care? I think I'm going to really need this
>to get approval for switching doctors.
>Thanks for reading this far and for any help you can provide!
>
I mostly just lurk here these days. My name is Robyn and my daughter
Brenna who is 3, has Crouzons syndrome. I just wanted to mention
that
there is a free packet that anyone can order from the Cleft Palate
foundation that has the 'set standards and parameters of care of Cranio
Facial teams'. WE used it for battling our insurance company
when we
wanted to go out of state for her care. It is an excellent source
if info
regarding CF teams and what qualities them. It is really an good
resourse
for us parents who have to choose what is best for our childrens needs.
You may call Cleftline at 1 - 800- 24-CLEFT to request it.
Good luck with everything!
Myrtle beach sounded like a blast! I'm jealous! :- )
Robyn
=========================================================================
Date: Tue, 22 Jun 1999
06:18:41 -0500
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Dora Jefferson
<dajeff@SIU.EDU>
Organization: Southern Illinois University at Carbondale
Subject: Re: Myrtle Beach REUNION!!!
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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It sounds as though you all had a great time. I am so jealous.
Thomas
and I must join you next year. I have enjoyed reading about your
adventures and your feelings. Thank you for sharing. The
pictures on
the Club House site are wonderful. What great shots. Everyone
looks so
good and so happy.
Warmly, Dori
=========================================================================
Date: Tue, 22 Jun 1999
00:22:05 -0500
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From: "Wendy S. Pak"
<Wendy_S._Pak@RIDLEY.ON.CA>
Subject: Other Reunion Locations
Comments: To: LISTSERV@listserv.aol.com
MIME-Version: 1.0
Content-type: text/plain; charset=ISO-8859-1
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I know I don't write often to the listserver, but now that I have some
time, I would like to make a few comments. I skim over the messages
that
are sent to the listserver and go by subject headings of whether or
not to
read the message if it may be relevant to me or my sister, otherwise
as
you all know, its a lot of messages to read. Anyway, it was wonderful
that a number of families could make it to Myrtle Beach. I know
I had
looked into going with my sister Jeany, but with the exchange rate,
the
cost would have been close to $2000 CDN to go. The timing as
Cathy
mentioned may move back later like the end of June when all kids and
teachers (like myself) are out of school. My main comment is
that maybe
the get togethers can move around every year. Now I think before,
Christine Clark had get togethers once a year with her group in different
locations. Correct me if I am wrong. Myrtle Beach is an
expensive place
to go. Of course, I am a Canadian so its even more expensive
with the
exchange rate. Since most of the people on the listserver are
American,
it would be better if we could have a get together in Canada like Niagara
Falls, Canada which is also popular tourist destination since the dollar
is better for Americans. I know Robyn McDonald has tried to get
some
families together there with no success. It would be nice if
we could set
something up. I believe there was a family that was planning
to visit the
Falls and ended up in Myrtle Beach for their vacation??? Just
a thought.
My sister really wants to meet others with Aperts, but we have not
been
able to set anything up. If we start planning early, people can
start
saving up as well.
I welcome any comments.
Wendy Pak
=========================================================================
Date: Tue, 22 Jun 1999
15:40:26 -0400
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From: Gary Puleio <p8896@ALLTEL.NET>
Subject: Insurance
MIME-Version: 1.0
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Hi everyone. I'm one of those silent readers that doesn't very
seldom
speak up but enjoys listening. My son Donald, 8 yrs in July,
has Apert.
My husband and I both work and have Blue Cross/Blue Shield insurance.
PA
has a Medical Assistance program that covers all expenses of a handicapped
child that your insurance doesn't NO MATTER WHAT THE PARENT'S INCOME.
My
last appointment with them, I asked if other states also have this
program
since it is federally funded. The caseworker told me some do
some don't
but check with your public assistance office. 20% of those $$150,000.00
bills is alot of money. Doctors don't usually know about it and
most
people don't ask. Check it out it's been wonderful here in PA.
No more "We
accept mastercard and Visa notes when the bills not paid. Florida
has the
program but you have to go to certain hospitals so check it out for
your
state. We deserve to save as much money as possible. Again,
it does not
go according to the family income!
Linda Puleio
p8896@alltel.net
=========================================================================
Date: Tue, 22 Jun 1999
14:58:46 -0500
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From: Dora Jefferson
<dajeff@SIU.EDU>
Organization: Southern Illinois University at Carbondale
Subject: Re: Insurance question?
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Just a question. Our insurance is through Rick's office but we
pay the
whole premium. His employer has been looking to change insurance
companies since the rates have become very high and it effects the
whole
group. I just found out that everone else in the group has been
switched to a new group with lower premiums and we were left the old.
Is this legal? How do I find out?
Thanks, Dori
=========================================================================
Date: Tue, 22 Jun 1999
16:43:06 +0000
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
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Sender: Information exchange and
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: Insurance question?
In-Reply-To: <376FEAF6.4AE6ECD9@siu.edu>
MIME-Version: 1.0
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> group. I just found out that everone else in the group has been
> switched to a new group with lower premiums and we were left the
old.
> Is this legal? How do I find out?
Check with your state insurance commissioner -- but be
aware that
the employer may have done it because the new group refused to take
on the pre-existing conditions covered under the old one. Leaving
you on the old coverage may have been the only way to ensure that
your child still had insurance. Check that out before you file
any
complaints.
Judy
=========================================================================
Date: Tue, 22 Jun 1999
20:28:42 -0500
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Sender: Information exchange and
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: pics
MIME-Version: 1.0
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boundary="----=_NextPart_000_02AD_01BEBCED.D1B00F40"
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Hi gang,
Will you all please say a prayer for me. that Don Sears does not
kill =
me. I have just scanned him roughly 110 pictures from vacation.
One at =
a time! This took up about four hours of my time today. lots
of work.
Can't wait till next year for round two!~!!!!!!!!!
jamerman@uti.com
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charset="iso-8859-1"
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">
<HTML><HEAD>
<META content=3D"text/html; charset=3Diso-8859-1" =
http-equiv=3DContent-Type>
<META content=3D"MSHTML 5.00.2014.210" name=3DGENERATOR>
<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT face=3DArial size=3D2>Hi gang,</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Will you all please say a prayer
for =
me. that=20
Don Sears does not kill me. I have just scanned him roughly
110 =
pictures=20
from vacation. One at a time! This took up about
four hours =
of my=20
time today. lots of work.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Can't wait till next year for
round=20
two!~!!!!!!!!!</FONT></DIV>
<DIV><FONT face=3DArial size=3D2><A=20
href=3D"mailto:jamerman@uti.com">jamerman@uti.com</A></FONT></DIV></BODY>=
</HTML>
------=_NextPart_000_02AD_01BEBCED.D1B00F40--
=========================================================================
Date: Tue, 22 Jun 1999
22:56:38 -0400
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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Comments: RFC822 error: <W> Incorrect or
incomplete address field found and
ignored.
From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Myrtle Beach & A Nasty Pimple
MIME-Version: 1.0
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Hi everyone,
I wish I would've been at Myrtle Beach with you all. I will definately
=
be there next year! So count me in! I am so jealous.
!>) Whoever =
took the pictures did a great job. They really capture the emotion.
=
Speaking of pictures, I'll be posting or sending mine out soon.
My eyes =
are still healing. I have a little chinese look still because
Dr. Wolfe =
pulled them upward.
If you or your children have a pimple that hurts. Get it checked out!
=
It can be Squamous Cell carcinoma (cancer). About two weeks before
=
surgery I had a pimple on my ear that hurt. I made an appointment
with =
the ear doctor, and saw him the following week. By then it stopped
=
hurting. He didn't know what it was, but removed it and sent
it to be =
tested. He said it was probably nothing, so we didn't worry,
and went =
on with the surgey. Well, while I was recovering at the hospital.
The =
doctor calls home and informs us that it is skin cancer. (Nice
timing!) =
It really shocked me and hit me hard. I'm barely in the
sun. =
Yesterday I had a mild surgery to see if any cells remained.
I am happy =
and very relieved to say their weren't.
I kept thinking what might have caused this since Im barely in the sun.
=
It can also be caused by overexposure to x-rays or other forms of =
radiation (computer screen?) I have had a lot of x-rays due to the
=
apert. =20
I wanted to mention this in case my buddies have been exposed to a lot
=
of x-rays or radiation, and the sun as well. If you would like
to read =
more about it heres a great website -
www.healthanswers.com/adam/top/view.asp?filename-000829.htm&rdir
I also want to add on that big THANK YOU to Don & Cathie, for not
only =
setting up Teeter's page, but creating this wonderful listserv as well.
=
It has done so much for me, and has given me a bigger understanding
of =
apert. It is interesting reading everyones story. I wish
I could of =
more help. I feel as if we are all holding hands and in
one big world =
together. You guys deserve an award.
Take Care,
Andrea
------=_NextPart_000_00E7_01BEBD02.7C3CDBA0
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3
=
HTML//EN"><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV>Hi everyone,<BR><BR>I wish I would've been at Myrtle
Beach with you =
all. I will definately be there next year! So count
me =
in! I=20
am so jealous. !>) Whoever took the pictures
did a great=20
job. They really capture the emotion. Speaking
of pictures, =
I'll be=20
posting or sending mine out soon. My eyes are still healing.
=
I have=20
a little chinese look still because Dr. Wolfe pulled them =
upward.<BR><BR>If you=20
or your children have a pimple that hurts. Get it checked out!
It =
can be=20
Squamous Cell carcinoma (cancer). About two weeks before
surgery I =
had a=20
pimple on my ear that hurt. I made an appointment with the
ear =
doctor, and=20
saw him the following week. By then it stopped hurting.
He =
didn't=20
know what it was, but removed it and sent it to be tested.
He said =
it was=20
probably nothing, so we didn't worry, and went on with the surgey.
=
Well,=20
while I was recovering at the hospital. The doctor calls
home and =
informs=20
us that it is skin cancer. (Nice timing!) It really
shocked =
me and=20
hit me hard. I'm barely in the sun. Yesterday I
had a mild =
surgery=20
to see if any cells remained. I am happy and very relieved
to say =
their=20
weren't.<BR><BR>I kept thinking what might have caused this since
Im =
barely in=20
the sun. It can also be caused by overexposure to x-rays
or other =
forms of=20
radiation (computer screen?) I have had a lot of x-rays due to the
=
apert. =20
<BR><BR>I wanted to mention this in case my buddies have been
exposed to =
a lot=20
of x-rays or radiation, and the sun as well. If you would
like to =
read=20
more about it heres a great website -<BR><A=20
href=3D"http://www.healthanswers.com/adam/top/view.asp?filename-000829.ht=
m&rdir">www.healthanswers.com/adam/top/view.asp?filename-000829.htm&r=
dir</A><BR></DIV>
<DIV> </DIV>
<DIV>I also want to add on that big THANK YOU to Don & Cathie,
for =
not only=20
setting up Teeter's page, but creating this wonderful listserv as =
well. It=20
has done so much for me, and has given me a bigger understanding of
=
apert. =20
It is interesting reading everyones story. I wish I could
of more=20
help. I feel as if we are all holding hands and
in one big =
world=20
together. You guys deserve an award.</DIV>
<DIV> </DIV>
<DIV><BR>Take Care,<BR>Andrea</DIV></BODY></HTML>
------=_NextPart_000_00E7_01BEBD02.7C3CDBA0--
=========================================================================
Date: Wed, 23 Jun 1999
00:50:16 +0000
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: Myrtle Beach & A Nasty
Pimple
In-Reply-To: <00ea01bebd24$0b5bf200$30d1a8d0@default>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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> I wish I would've been at Myrtle Beach with you all. I will
definately be there next year! So count me in! I am so jealous.
!>) Whoever took the pictures did a great job. They really
capture th>
> If you or your children have a pimple that hurts. Get it checked
out! It can be Squamous Cell
> carcinoma (cancer).
Itching and scaling are also signals
if they last for more
than a few days. In fact, any odd-looking skin lesion needs to
be
checked out. The vast majority are OK, but squamous cell
lesions
can cause significant disfigurement if you ignore them. BTW,
ears
and nose are very high-risk places. Most of us forget the sunscreen
on ears and don't put enough on noses. They stick out and they have
fairly thin skin.
You don't say which ear, but odds are very
high
that it's on the same side as the side of the car you most often sit
on. Want to know why I'm guessing that? I had a scare recently
--
turned out to be a benign lesion, but the dermatologist said that men
tend to get skin cancer on the left hand, ear, and arm more commonly
-- and women on the right. She says it's because of the side
of the
car we most often sit on. OTOH, I'm more likely to be in the
driver's seat on sunny days and the passenger seat evenings since my
DH works days & I don't, so that probably doesn't apply to me.
She
also said that fingers and the backs of hands are high risk due to
the time spent in the car.
Bottom line, if you have a skin lesion, get it checked out. Have
someone look at your back and the backs of your legs for you -- those
are the most common places to find melanomas.
Judy
=========================================================================
Date: Wed, 23 Jun 1999
11:02:33 -0400
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Comments: To: "fullmerx6@thegrid.net" <fullmerx6@thegrid.net>
MIME-Version: 1.0
Content-Type: text/plain
Hi! It's great to hear from you - congratulations on your twins!
I
know you've got a lot on your mind right now so I'm going to keep it
brief and simple. I am signing you up for our email listserv,
and
forwarding this letter to introduce you to our growing family of 180
subscribers.
You will receive all mail posted to the listserv, and you can also post
by sending email to this address: apert@listserv.aol.com
Instructions for getting your own family web page are at the bottom
of
Teeter's Page at http://www.apert.org and you'll find lots of other
information there too, like how to join Apert Chat and other features
like our listserv archives.
We're glad to have you with us!
Don, Cathie, & Teeter
-----Original Message-----
From: fullmerx6@thegrid.net [mailto:fullmerx6@thegrid.net]
Sent: Sunday, June 20, 1999 1:22 AM
To: catndon@apert.org
Subject:
Hi, we are the Fullmers, Drew, Lorrie, Amanda, Randy, Fallon, Charles
and The newest Apert kid Clarice. Charles and Clarice were born 12
April, 1999 but only Clarice was affected. We are new to this whole
thing. We have already started the ball rolling with Lucile Salter
Packard Childrens Hospital at Stanford in Palo Alto, Calif. Just by
chance we met one of your friends, Kelly Spadini at the hospital on
wednesday she was a true inspiration. Please tell us how to get included
in all of your stuff you can e-mail us at FULLMERX6@THEGRID.NET Hope
to
hear from you soon and many thanks. DREW AND LORRIE
=========================================================================
Date: Wed, 23 Jun 1999
09:58:56 -0500
Reply-To: Information exchange and Internet
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Re: other reunion locations
MIME-Version: 1.0
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I would like to put my thoughts in on this.
As much as i enjoy travelling and seeing more of this world, I feel
that =
changing locations every year could impose some problems. If
left as =
is, this would be a trip that everyone knows about for every year.
by being at the beach, there are tons of things to do but not
only =
that, the kids are entertained daily by just being at the hotel.
Yo =
don't have to worry about what are we going to do today to keep our
kids =
entertained,
Yes, I agree that it is a big expense but so would any vacation. there
=
are other places to stay rather than the Crownreef that are less costly.
It is very easy to get with the other families that are at the beach.
My fear of relocating to various places would be having to be at a =
certain place with the group at all times of day. tired, crabby
kids =
and adults with no where to go.
Even if it were in disney, all the attractions alone could be a killing
=
expense.
i really see no problem if there were more than one gettogether a year
=
to accomodate people living in various locations, I may even
go to more =
than just Myrtle Beach, but personally I feel that this to be
an annual =
thing should be left to rest.
Niagara falls sounds nice but what else is there to do?
Nothing personal here, just my thoughts.
judy
jamerman@uti.com
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<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT face=3DArial size=3D2>I would like to put my thoughts
in on=20
this.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>As much as i enjoy travelling
and =
seeing more of=20
this world, I feel that changing locations every year could impose
some=20
problems. If left as is, this would be a trip that everyone
knows =
about=20
for every year.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>by being at the beach,
there are =
tons of=20
things to do but not only that, the kids are entertained daily by just
=
being at=20
the hotel. Yo don't have to worry about what are we going
to do =
today to=20
keep our kids entertained,</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Yes, I agree that it is a big
expense =
but so would=20
any vacation. there are other places to stay rather than the Crownreef
=
that are=20
less costly.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>It is very easy to get with
the other =
families that=20
are at the beach.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>My fear of relocating to various
places =
would be=20
having to be at a certain place with the group at all times of =
day. tired,=20
crabby kids and adults with no where to go.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Even if it were in disney, all
the =
attractions=20
alone could be a killing expense.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>i really see no problem if there
were =
more than one=20
gettogether a year to accomodate people living in various =
locations, I may=20
even go to more than just Myrtle Beach, but personally I
feel that =
this to=20
be an annual thing should be left to rest.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Niagara falls sounds nice but
what else =
is there to=20
do?</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Nothing personal here, just
my=20
thoughts.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>judy</FONT></DIV>
<DIV><FONT face=3DArial size=3D2><A=20
href=3D"mailto:jamerman@uti.com">jamerman@uti.com</A></FONT></DIV></BODY>=
</HTML>
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=========================================================================
Date: Wed, 23 Jun 1999
11:51:42 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Ize <ize@MASTER.CEAT.OKSTATE.EDU>
Subject: Re: Welcome!!!
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Congratulations and welcome to the Fullmers, Drew, Lorrie, Amanda,
Randy, Fallon, Charles and The newest Apert kid Clarice.
We are the Ize's, Claudia,
Carlos, Rafael and Felipe from Tulsa,
Oklahoma. Rafael and Felipe are twins and they are going to be 4 in
September. Felipe was born with Apert's. Like you, just one kid was
affected. I know is not ease to take care of two babies at the same
time, but as everybody uses to say, God never gives you more than you
can handle!!! We survived, you can trust me on that!
I want to wish you good
luck on your journey. Hope to hear from you
soon!!
Take care,
Claudia Ize.
=========================================================================
Date: Wed, 23 Jun 1999
13:13:56 -0400
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From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Subject: Re: other reunion locations
In-Reply-To: Judy Amerman <jamerman@UTI.COM>'s message of
Wed, 23 Jun 1999
09:58:56 -0500
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I would like to add my two cents to this as well.
We live on a limited income for the time being, and Myrtle Beach is
a
five hour drive for us, so it was the only possibility of us (the Holt
Family) having the oppertunity to be a part of this wonderful reunion.
I would love to go to Myrtle Beach next year as well. We enjoyed
our
stay! We can't wait for next year, hopefully at Myrtle Beach!
I ditto what Judy said, nothing personal but it is my two cents!
Mechelle
=========================================================================
Date: Wed, 23 Jun 1999
11:00:13 -0700
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From: "Pulido, Laura"
<PulidoL@OR.CSMC.EDU>
Subject: Picture of my kids
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Hello everyone,
> Here's a picture of my kids taken on 6/12/99. Martha is 3 years
old and
> Eddie is two. They're both squinting because the sun was right
in their
> face. I had to share with all of you - I am so proud of both
of them.
> Martha is starting to put four to five words together - that make
sense!
> Both kids are learning English and Spanish and understand both languages.
> Martha is also starting to use the potty. Yeah!!!
>
>
>
> <<Martha & Eddie.jpg>>
>
>
>
=========================================================================
Date: Wed, 23 Jun 1999
14:31:05 EDT
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From: Sandra Jones
<AJones7692@AOL.COM>
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Hi from the uk,
I've just spent a lovely time , looking at all the pictures in the club
house. I've been in hospital for a few days , they really cheered
me , up
all those happy faces.
Richard has a lot of problems with ear infections one of his ears, he
has to
waer earing aid in both ears, is it a common problem? Iam trying (but
not
suceeding to scan picture to email off ) Any ideas how its done.
Hope everyone well,
Bye for now
Sandra , Andrew,
Matthew , Richard & David ( from Wales in the UK )
=========================================================================
Date: Wed, 23 Jun 1999
17:24:00 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Re: standards of care
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Robyn,
Thanks for the information! I just called to request the pamphlet.
I want
all the ammunition I can get to fight the insurance company with.
Kieran saw
his ped. gastroenterologist for his reflux today, and he said he would
also
include a note in his report saying that we needed a craniofacial team.
The
more doctors who note it, the better for us!
Unfortunately, we didn't get to Myrtle Beach this year either, but I'm
going
to try my darndest to make it next year!
Thanks again,
Sherry
Robyn Johnston wrote:
> Hi Sherry,
>
> >Does anyone know where I can get a copy of Michigan's state standards
> >and guidelines of medical care? I think I'm going to really need
this
> >to get approval for switching doctors.
> >Thanks for reading this far and for any help you can provide!
> >
> I mostly just lurk here these days. My name is Robyn and my
daughter
> Brenna who is 3, has Crouzons syndrome. I just wanted to mention
that
> there is a free packet that anyone can order from the Cleft Palate
> foundation that has the 'set standards and parameters of care of
Cranio
> Facial teams'. WE used it for battling our insurance company
when we
> wanted to go out of state for her care. It is an excellent
source if info
> regarding CF teams and what qualities them. It is really an
good resourse
> for us parents who have to choose what is best for our childrens
needs.
>
> You may call Cleftline at 1 - 800- 24-CLEFT to request it.
> Good luck with everything!
>
> Myrtle beach sounded like a blast! I'm jealous! :- )
>
> Robyn
=========================================================================
Date: Wed, 23 Jun 1999
15:36:59 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: Hi Everybody just this and that!
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Hi all I just thoughuld write to you guys while Iam trying to
stay cool
here in very hot Calif.
Laura-Your picture of lttle Martha and Eddie is adorable.
Little Martha
doesn't even look like she has Aperts. Has she have any surgerys? You
should
enter that in a contest. It's so summertime fun! And they both know
spanish
and English thats great! They will go far in this world! I love it.I
can see
why you are so proud of them I would be too! Where are you from? I
would
like to meet you sometime if I can? That is if your close by.
Welcome to the family Fullmers, My name
is Maxine Reed and Iam 45
years old with Aperts! I too live in Calif. I live in hot hot Modesto,
Calif. Where do you live? You'll find this a great place to get lots
of info
and and a great place to meet alot of neat people. You can find out
more
about me on Teeter's page and see a picture of my family and I. been
married
for 15 lovely years to a wonderful man named Bob and we have a 15 year
old
going on 20 daughter named Sarah she's our pride and joy and she's
a very
normal teenager without Aperts. If you have any questions you can E-mail
me
here or at rreed@cableone.net privately. or call me at (209)524-2141.
I'll
be happy to answer any questions that you have. Again Welcome to the
family.
I also want to welcome the other new familys. You to can ask me any
questions I'll be happy to answer any of them.
I too want to thank you Don for this wonderfull listsever and
Teeter's
page. I love the beach pictures their great!! Did you ever get my pictures
scanned so I can send them out?
Sandra, I too wear hearing aids in both ears and I hear so much better.
I
just got them a couple of months ago. All these years I have had troubled
with hearing, and this year I found out that it's part of the Aperts.
But I
don't think it afects all of us with aperts though. I think there's
surgery
that can correct it though. You might find out about it. Iam too old
to have
any more surgerys (45).
I agree with Judy and staying at Mrytle Beach. Thereis alot to
do and there
are cheaper hotels.It's just a fun place to be for kids and Adults.
But Iam
game to go other places if I can afford it. I have gone to the Calif.
get
togathers with Christine Clark. By the way Christine is there another
one
comming up? I'd like to go if we can have a get togather? How are you
doing
by the way? Iam doing great!
Well I better close. My computer is ether getting to hot or Iam
hot and
making misstakes. Sorry fot the misstakes. Hope you can understand
what I
said and meant what I said. Take care all. Love ya all Max
=========================================================================
Date: Wed, 23 Jun 1999
19:35:46 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: other reunion locations
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Hi all,
I really must also agree with Judy on the subject of keeping Myrtle
Beach as the once a year reunion spot. It is a great place to
take the
family. We were only there for two days, but let me tell you
next year
one week for sure. We will be hitting the water parks and all
those
other amusement parks etc. The Crown Reef is wonderful it's well
worth
it, especially that lazy river.....We know how long it takes us to
get
there and basically how much we would need to save up for next years
visit give or take a few bucks or shall I say several bucks?
Planning
other reunions at other places isn't a bad idea for those that can't
make it to Myrtle Beach can then plan to attend other reunions.....My
three cents...
Raquel Miller....
=========================================================================
Date: Thu, 24 Jun 1999
00:03:08 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Re: KENTUCKY
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Denise,
Thanks for the information. I'll definitely be looking into those
doctors.
I'm also going to get in touch with Dr. Jackson to see who, specifically,
he
had in mind.
Sherry - mom to Kieran-3mos w/Apert's, Laney-4 w/CVS & Bailey-7
cgraham wrote:
> SHERRY,
>
> We also go to Lexington,
KY for hand surgeries. We see Dr. Burgess
> and he is very experienced with aperts hands too! We have also
seen Dr.
> Sheker and he is great. Both of them are popular and experienced
with
> aperts and travel around the world to conferences on hands.
Dr. Burgess
> just tried something new with Daryl and it was sucessful, we will
be doing
> his left hand in the fall with this tendon transplant. We couldn't
be
> happier with him. Which ever you choose if you go to kentucky
you will be
> in capable hands. We chose Burgess after we had seen 5 other
hand
> surgeons. We were going to see Sheker, but Burgess lives in
Lexington, so
> we thought if we had any emergencies he would be there. Sheker
lives in
> Louisville. Good luck!!
>
>
Denise Graham
=========================================================================
Date: Thu, 24 Jun 1999
00:04:57 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Re: Hand Surgery
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Dana,
Thanks for the detailed info. If we decide to go to Louisville,
we'll definitely
let you know.
Sherry - mom to Kieran-3mos w/Apert's, Laney-4 w/CVS & Bailey-7
Dana White wrote:
> Dear Sherry,
>
> Here is some information
re: Kleinert, Kutz and Associates. They
> have offices in Louisville and Lexington, KY. I found them
on the web so you
> can see a bio of each of the surgeons with their experience, etc.
The sight
> also has lots of other information from saftey tips to avoid hand
injury to a
> hand library of journals. Dr. Luis Scheker who was mentioned
by Susan Peck
> as the surgeon she sees for Ryan is part of this group.
>
> http://www.jhhs.org/hndmicrserv.html
>
> or you can reach them in Louisville with the following information:
>
> Kleinert, Kutz and
Associates Hand Care Center, PLLC
> Suite 700
> 225 Abraham Flexner
Way
> Louisville, KY 40202
> For emergency care
or to schedule an appointment, call
> (502) 561-HAND (4263)
1-800-477-4263 (toll free)
>
>
Harold E. Kleinert, M.D., FACS
>
Joseph E. Kutz, M.D., FACS
>
Thomas W. Wolff, M.D.
>
Tsu-Min Tsai, M.D.
>
Luis R. Scheker, M.D.
>
Warren C. Breidenbach, M.D., FRCS(C)
>
Steven J. McCabe, M.D
>
Amit Gupta, M.D.
>
William L. O'Neill Jr., M.D.
>
Therese-Anne LeVan, M.D.
>
Michael J. Moskal, M.D.
>
Erdogan Atasoy, M.D., FACS
>
> When I had my hand and foot surgeries, I was operated on by Dr. Harold
> Kleinert who started this practice. (Please note that my surgeries
were not
> as extensive as some of the other kids and there may be other doctor's
> recommended to you). I'd say he is getting up there in age
and likely only
> teaches at this point. I hear Dr. Kutz is excellent.
Warren C. Breidenbach,
> M.D. was the physician repeatedly on the local news when Mathew Scott
> received the first hand transplant in the U.S. It would seem
that if they
> could attach a donor hand, they could do just about anything!!
>
> Let me know if you are coming to Louisville, I work across the street
from
> Dr. Kleinert's office. He would likely remember me.
>
> Take Care,
> Dana White
> Louisville, KY
> (502) 491-2986
=========================================================================
Date: Thu, 24 Jun 1999
00:07:58 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Shriners
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Robin,
We have a very close friend whose father has offered to sponsor us.
We'll be
getting him the information he needs to start the ball rolling a.s.a.p.
I
think we may look into them for the hands and feet.
Thanks,
Sherry - mom to Kieran-3mos w/Apert's, Laney-4 w/CVS & Bailey-7
ROBIN L HILL wrote:
> Sherry,
>
> This is Mike. Robin and I have a little one named Carmen Rae.
Carmen Rae
> is 17 months old and we were in your shoes like everyone else on
the
> listserver has been.
>
> I have been in a constant battle with my insurance company and I
have Blue
> Cross & Blue Shield. Lucky for us, we have a Cranial Facial
Team at Emory
> University that were listed as primary care physicians.
>
> I would suggest that you look into assistance from the Shriners.
You can
> find out about the application process at
> www.shrinershq.org/Hospitals/eligible.htlm.
> Toll Free No: 800-237-5055. You have to get the local
temple to sponsor
> you, submit the application and we can all pray for your acceptance.
>
> I know that our Cranial Facial Team performs the surgerys for the
Shriners
> at
> Scottish Rite in Atlanta, GA. The plastic surgeon is Dr. Robert
Wood and
> he did such a fabulous job on Carmen Rae's Cranial Vault Remodeling.
He is
> assisted by Dr. Petronio, the Pediatric Neurosurgeon. If accepted,
the
> Shriners will even pay for your airline tickets.
>
> A guy that works for me is a Shriner and is very involved.
He said if he
> can do anything to help get you in the program, just let me know
and he
> would see what he could do. If you need to email us direct,
we're at
> Carmenrae@prodigy.net.
>
> Good Luck!
> ----------
> > From: Greg and Sherry Roehl <gnsroehl@FLASH.NET>
> > To: APERT@LISTSERV.AOL.COM
> > Subject: Craniofacial Teams
> > Date: Tuesday, June 15, 1999 1:41 AM
> >
> > Me again! I warned you that I'd have a lot of questions.
:-)
> >
> > This time I'm wondering if everyone works with a craniofacial clinic.
> > Our HMO is trying to reassure me that Kieran will get the care
he needs
> > through their system, even though they don't have a craniofacial
> > clinic. This is contrary to everything I've read and what
I've heard
> > from Associations that deal with craniofacial anomalies.
It also goes
> > against my gut instinct. Unfortunately, there's no way we
could
> > possibly afford to pay for everything ourselves, and our current
> > insurance won't cover one.
> >
> > We have 2nd and 3rd opinions scheduled for this week at clinics.
When I
> > spoke to managed care today, they agreed to pay for one of the
plastic
> > surgery opinions, but no more. When I talked about the neurosurgeon,
> > they suggested I see another one in their system. I declined,
and will
> > pay out of pocket for the remaining visits to the neurosurgeon
and
> > plastic surgeons affiliated with the clinics. The managed
care worker
> > went so far as to suggest that I'll just confuse myself with all
of
> > these opinions with all these different doctors. While that
may be true
> > to a degree, I feel I need to get all the information that I can
before
> > entrusting Kieran to anyone.
> >
> > Kieran is scheduled to have a bifrontal craniotomy with left, right
> > orbital advancement on June 30th, but I'm seriously considering
> > canceling it. We'll have to decide when all opinions are
in. The
> > scheduled procedure is not through one of the clinics. Although
I like
> > the neurosurgeon who would perform the surgery, I wonder if all
of his
> > care should go through a clinic. Unfortunately, until
we can change
> > our insurance, it's not possible right now, so it would mean a
delay in
> > any treatment.
> >
> > I guess my questions are: is there anyone here that does not receive
> > care through a craniofacial clinic? Or has anyone transferred
to one
> > after having an initial surgery to release the sutures performed
> > elsewhere?
> >
> > As you can tell, this important decision is weighing heavily right
now.
> > I want the best for my baby, but it's so hard to tell what that
is.
> >
> > Thanks for listening and any input you can provide!
> > Sherry Roehl - mom to Kieran-3 mos w/Apert's, Laney-4 w/CVS, &
Bailey-7
=========================================================================
Date: Thu, 24 Jun 1999
00:22:04 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Welcome
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Welcome to the Fullmer family. We're the Roehl's - Sherry, Greg,
Bailey, Laney & Kieran. I hope you find as much information
and support
here as we have since Kieran's birth!
Sherry - mom to Kieran-3mos w/Apert's, Laney-4 w/CVS & Bailey-7
=========================================================================
Date: Thu, 24 Jun 1999
00:22:41 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Re: Picture of my kids
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What an adorable picture. Thanks for sharing.
Sherry Roehl
"Pulido, Laura" wrote:
> Hello everyone,
> > Here's a picture of my kids taken on 6/12/99. Martha is 3
years old and
> > Eddie is two. They're both squinting because the sun was
right in their
> > face. I had to share with all of you - I am so proud of both
of them.
> > Martha is starting to put four to five words together - that make
sense!
> > Both kids are learning English and Spanish and understand both
languages.
> > Martha is also starting to use the potty. Yeah!!!
> >
> >
> >
> > <<Martha & Eddie.jpg>>
> >
> >
> >
>
> ------------------------------------------------------------------------
>
Name: Martha & Eddie.jpg
> Martha & Eddie.jpg Type:
JPEG Image (image/jpeg)
>
Encoding: base64
=========================================================================
Date: Thu, 24 Jun 1999
00:25:06 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Ear infections
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Sandra,
We've been warned that hearing loss is a constant threat with Apert's.
Kieran
is only 3 months old and is already battling his third ear infection
- all have
been in his right ear. He'll probably need tubes in the future
if this
continues. From what I understand, it is a very common problem.
Sherry Roehl
Sandra Jones wrote:
> Hi from the uk,
>
> I've just spent a lovely time , looking at all the pictures in the
club
> house. I've been in hospital for a few days , they really cheered
me , up
> all those happy faces.
>
> Richard has a lot of problems with ear infections one of his ears,
he has to
> waer earing aid in both ears, is it a common problem? Iam trying
(but not
> suceeding to scan picture to email off ) Any ideas how its done.
>
> Hope everyone well,
>
> Bye for now
>
> Sandra , Andrew,
> Matthew , Richard & David ( from Wales in the UK )
=========================================================================
Date: Wed, 23 Jun 1999
23:10:42 -0700
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From: sheryl <slclem@ACCESS1.NET>
Subject: Introduction
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Hi, My name is Sheryl Klemm and I have only known about Aperts since
February of this year. February of next year I shall be marrying
a
wonderful man with Aperts and taking on the responsibility of helping
him
raise his 8-year old daughter who also has Aperts.
I can tell from all the posts I have read (I've been lurking since just
before the Myrtle Beach gathering), that the really worst appears to
be
behind me. Beth will probably have 2 more facial surgeries and
perhaps one
more on her fingers (not yet determined if the index and middle finger
on
each hand have separate blood vessels).
I am glad to be joining this wonderful family and shall be introducing
James
to it when he visits next week (He lives in Virginia and I live in
California--Concord).
I really appreciate all the information I have gleaned, especially the
discussions concerning insurance and standards of care. A big
concern to me
now.
I would love to hear from any of you in California.
Sheryl
=========================================================================
Date: Thu, 24 Jun 1999
07:45:40 -0500
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From: Carol <tcgraves@BELLSOUTH.NET>
Subject: get togethers
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I would have loved to been at Myrtle Beach this year, but couldn't.
=
Plan on it next year though...I think it would great to keep the
Mrytle =
Beach reunion but maybe have others ones also in different areas of
the =
country that wouldnt be so far for others to travel to .... There's
=
nothing that says the Mrytle Beach one has to be the only one and as
=
Mechelle Holt said they were only 4 hours away and thats the only reason
=
they got to go... but there are others across the country that would
=
love to meet others also that dont live just 4 hours away, so maybe
some =
of them could discuss and plan a get together in a different location
=
for those too far away to make it to Myrtle Beach... I know I
have read =
on the listserv of other Apert and craniofacial gatherings and picnics
=
in various areas... so maybe someone on the listserv would like to
=
co-ordinate a gathering similiar to the Mrytle Beach one but someplace
=
else for the folks that cant make it... well, I have rambled on
and =
repeated myself enough.. just wanted to make sure no one feels excluded
=
when it comes to meeting other listserv families... there are plenty
of =
us and hopefully everyone is close enough to meet someone .
------=_NextPart_000_0011_01BEBE15.8E30B520
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charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
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<HTML><HEAD>
<META content=3D"text/html; charset=3Diso-8859-1" =
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<BODY bgColor=3D#ffffff>
<DIV><FONT size=3D2>I would have loved to been at Myrtle
Beach =
this year,=20
but couldn't. Plan on it next year though...I think it would
great =
to keep=20
the Mrytle Beach reunion but maybe have others ones also
in =
different=20
areas of the country that wouldnt be so far for others to travel to
=
.... =20
There's nothing that says the Mrytle Beach one has to be the only one
=
and as=20
Mechelle Holt said they were only 4 hours away and thats the only reason
=
they=20
got to go... but there are others across the country that would love
to =
meet=20
others also that dont live just 4 hours away, so maybe some of them
=
could=20
discuss and plan a get together in a different location for those too
=
far away=20
to make it to Myrtle Beach... I know I have read on the listserv
=
of other=20
Apert and craniofacial gatherings and picnics in various areas... so
=
maybe=20
someone on the listserv would like to co-ordinate a gathering similiar
=
to the=20
Mrytle Beach one but someplace else for the folks that cant make it...
=
well, I=20
have rambled on and repeated myself enough.. just wanted to make
sure =
no one=20
feels excluded when it comes to meeting other listserv families...
there =
are=20
plenty of us and hopefully everyone is close enough to meet someone=20
.</FONT></DIV></BODY></HTML>
------=_NextPart_000_0011_01BEBE15.8E30B520--
=========================================================================
Date: Thu, 24 Jun 1999
10:43:57 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: TFinch10@AOL.COM
Subject: addresses etc
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hi All,
I apologize for being slow..but where can I find the addresses for
the
picture exchange? With school closing, there is a little slice of time
to
send ours out. Just wanted to share a small joy--Nate finishes second
grade
today. We had a meeting with all of his teachers and our once-every-three
years evaluations. While the pyschologist who did a screening of his
auditory/visual memory noted that he scored quite low on both, his
teacher
said that he was one of two kids in her regular ed class to score 100%
on a
math test that covered all of what they'd learned over the year. We
all
laughed. Obviously Nate has figured out his own ways to adapt and compensate
and use what he's got to do what he needs to do! School is not easy
for him
but he works very hard. These are the moments of pride that every parent
has
but feel extra sweet when you know how many struggles are part
of
it...Warmly, Jeanne in Boston
=========================================================================
Date: Thu, 24 Jun 1999
11:08:38 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Subject: Re: get togethers
In-Reply-To: Carol <tcgraves@BELLSOUTH.NET>'s message of Thu,
24 Jun 1999
07:45:40 -0500
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)
I am glad that other families are able to meet at other locations, so
they can have a reunion as well! I wish we could attend more
than we
are able to. It was just that we live 5 hours away, and it made
our
travel plans simpler. This is not to say this is the reason we
would
like to have it at Myrtle Beach every year. The children, had
a
wonderful time. We had a place to actually have room for all
of us to
gather, and enjoy ourselves. There were many oppertunites for everyone
to have a vacation, plus spend time with other families.
Just
another thought!
Mechelle :))
=========================================================================
Date: Thu, 24 Jun 1999
11:10:53 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Subject: Re: Picture of my kids
In-Reply-To: "Pulido, Laura" <PulidoL@OR.CSMC.EDU>'s message
of Wed, 23 Jun
1999 11:00:13 -0700
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)
Laura,
The picture is adorable! You have reason to be proud!
They are cute!
Mechelle
=========================================================================
Date: Thu, 24 Jun 1999
11:18:46 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Introduction
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
HI SHERYL, YOUR NOTE CAUGHT MY EYE BECAUSE OF THE LAST NAME. MY FORMER
PASTOR'S NAME IS JERRY KLEMM FROM ORANGE PARK, FL. ARE YOU ANY KIN?
HE HAS A
SON WITH HURLERS SYN.(SP) MARILYN CARLEE;S GRAM
=========================================================================
Date: Thu, 24 Jun 1999
10:59:43 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Carbide Tech
<ruth@CARBIDETECH.COM>
Subject: Re: Picture of my kids
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Hi there everyone!
Ruth Contreras here...Mom to Kris (15 y/o w/ apert) I hope everyone
is
doing fine...from the sound of your vacation in Myrtle Beach it sounds
like
everyone had a great time!!
We took Kris (and her siblings, as she likes to say) to Disneyworld
in
Florida...My kids had such a good time..although it rained every single
day.!! which I thought was good because it was not as hot!!!
Kris did
not appreciate it..one bit!! But she still enjoyed herself BIG TIME!!!
She
especially enjoyed it...because before we went into the park we got
a
"special permit" to allow us ti get in front f the lines..it was totally
awesome!!! No waiting in line for hours!!!
RE: VACATIONS , My 2 cents.... We would have loved to go to Myrtle
Beach..and actually we did have reservations to go..but we decided
not to
go..because Kris had been wanting to go to Disney world for about 3
years
now...and you know how it is..surgery after surgery..we finally decided
that she had waited long enough...ANYWAY....
Since we are all spread out through out the country...I think what would
be
more convenient for me...is to meet somewhere in the middle...There
is
Texas or Oklahoma...Just my 2 cents..
Any other suggestions?
Laura, your kids are toooooooo cute!!! My mother is always getting after
me
for not teaching my kids both languages..I try!!!!
Kris is very good at both!! She is very fluent in Spanish...but sometimes
she can get lost...
Adios Mis Amigos!
Ruth Contreras
----------
> From: Pulido, Laura <PulidoL@OR.CSMC.EDU>
> To: APERT@LISTSERV.AOL.COM
> Subject: Picture of my kids
> Date: Wednesday, June 23, 1999 1:00 PM
>
> Hello everyone,
> > Here's a picture of my kids taken on 6/12/99. Martha is 3
years old
and
> > Eddie is two. They're both squinting because the sun was
right in
their
> > face. I had to share with all of you - I am so proud of both
of them.
> > Martha is starting to put four to five words together - that make
sense!
> > Both kids are learning English and Spanish and understand both
languages.
> > Martha is also starting to use the potty. Yeah!!!
> >
> >
> >
> > <<Martha & Eddie.jpg>>
> >
> >
> >
>
=========================================================================
Date: Thu, 24 Jun 1999
09:50:15 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: rreed <rreed@CABLEONE.NET>
Subject: Welcome to the family
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Hi Sheryl My name is Maxine Reed, Iam 45 years old and I have Aperts.
Iam
happily married to a wonderful man for 15 years who has Cerebral palsy,
but
he can do just about anything and gets around on crutches really well.
We
live in Modesto, Calif. Which is about 2 hrs. away from Concord I think!
You
can read more about me on Teeter's page. Maybe we can get togather
sometime
and meet? You'll find that we'er a great group!. If you have any questions
that you want to ask just E-mail me here or at:rreed@cableone.net or
you can
call me at (209)524-2141 anytime. I'll be happy to answer any of your
questions. Well gota go. I'll write more later. Take Care all.
=========================================================================
Date: Thu, 24 Jun 1999
12:47:27 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Laura Maes <RALL98MD@AOL.COM>
Subject: Re: HI :)
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hi , I was eavesdropping on your message and read something about a
Golden
Access Pass. Is this for any disability or facial cranial only?
I have a
daughter who is mentally retarded. She is 12 years old.
By the way I an
reading the listserv mailing because I recently (june 2) had a friend
deliver
an aperts baby.
Laura Maes
Harbor city,California
RALL98MD@aol.com
=========================================================================
Date: Thu, 24 Jun 1999
11:32:10 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: get togethers
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
The chances of my family ever making to that part of the country are
two:
slim and fat! But I know you all had a fabulous time because
I did get to
a Cleft symposium in California a few years back, and there is nothing
like
these reunions. I'm thrilled that you all were able to
meet at Myrtle Beach.
However, I love to meet other families whom I know via this correspondence.
And ... *I hear tell of a gathering happening in the Northwest early
this
summer -- over the fourth of July in Seattle and possibly another around
the
Spokane area.
Anyone interested?
Let me know.
Pat in Calgary,
mommy to the Peach (late with the picture exchange!)
=========================================================================
Date: Thu, 24 Jun 1999
13:33:50 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Subject: Re: HI :)
In-Reply-To: Laura Maes <RALL98MD@AOL.COM>'s message of Thu,
24 Jun 1999
12:47:27 EDT
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)
It is for anyone who has a disability! The only thing is, that
you have
to have documentation, of the disability, They aren't difficult
to get!
If I can help, let me know!
Mechelle:)
=========================================================================
Date: Thu, 24 Jun 1999
11:37:16 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: [Fwd: deadly payphones TIME]
Comments: To: "Elliston, Keith & Michelle" <Elliston@pacbell.net>,
"McGrew, Dan
& Peggy" <dmcgrew@lanset.com>,
Benny &
Debbie Hopper <BEHOPNC@aol.com>,
Bob & Cheryl
Pettis <drbob28@mciworld.mci.com>,
Bob Knapp <robert.knapp@nationscredit.com>,
Brent Law <blaw@tpgone.com>,
Carissa <cel@selectpersonnel.com>,
Danny Ing <dannyi@amrcom.com>,
David W Brown
<dbrown@sophia.smith.edu>,
Don & Linda
Weber <donalin@alaska.net>,
Jeff & Linda
Monnot <ffej@interx.com>,
John Taglieri
<"john taglieri"@nationscredit.com>,
Olivia Case
Ayers <Ocase0130@aol.com>,
Keith Whit <kbwhit@foothill.net>,
Ray & Susan
Pope <rpope27911@aol.com>, Rick Gahn <gahn@prodigy.com>,
Sarah Davis
<Grrrlnightbreed@hotmail.com>,
Scott Raymond
<scott.raymond@nationscredit.com>,
Tom & Barbara
Gargano <gargano@soon.com>
MIME-Version: 1.0
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FYI
Brent
--------------01D437EEDAB6548DC10A1E35
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From: "John Brooks" <jbkonga@hotmail.com>
To: ccdavis@hotmail.com, darren.mccarthy@nationscredit.com, dboon@ns.net,
dfontana@inreach.com, ccvfs.gkurp@capital.ge.com,
hanavan_gssk@msn.com,
jmoen@nalco.com, jcm_raider_fan@hotmail.com,
fambrooks@earthlink.net,
jamcdermott@worldnet.att.net,
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RMotroni@attws-wr.swest.attws.com,
JLLT67A@prodigy.com,
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Subject: deadly payphones TIME
Date: Tue, 11 May 1999 10:40:14 PDT
Mime-Version: 1.0
Content-type: text/plain; format=flowed;
Hello, this is to warn every one of a new thing happening in communities as a gang initiation and such. If you care about anyone, please forward this to them immediately so they can learn of the possible harm. Even if you don't read this, at least forward it to people.
Hello, my name is Tina Strongman and I work at a police station, as
a
phone operator for 911. Lately, we've received many phonecalls
pertaining to a new sort of problem that has arisen in the inner cities,
and is now working it's way to smaller towns. It seems that a new
form of gang initiation is to go find as many pay phones as possible and
put a mixture of LSD and Strychnine onto the buttons. This mixture
is deadly to the human touch, and apparently, this has killed some people
on the east coast.
Strychnine is a chemical used in rat poison and is easily separated from the rest of the chemicals. When mixed with LSD, it creates a substance that is easily absorbed into the human flesh, and highly fatal.
Please be careful if you are using a pay phone anywhere. You may
want to wipe it off, or just not use one at all. If you have
any
questions, you can contact me at the links listed below.
Please be very careful.
Let your friends and family know about this potential hazard.
Thank you.
Tina Strongman
_______________________________________________________________
Get Free Email and Do More On The Web. Visit http://www.msn.com
--------------01D437EEDAB6548DC10A1E35--
=========================================================================
Date: Thu, 24 Jun 1999
11:42:42 -0700
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safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: [Fwd: Fw: This is real, please
do it!!]
Comments: To: "Elliston, Keith & Michelle" <Elliston@pacbell.net>,
Benny &
Debbie Hopper <BEHOPNC@aol.com>,
Bob & Cheryl
Pettis <drbob28@mciworld.mci.com>,
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<ccvfs.gkurp@capital.ge.com>,
"darren.mccarthy@nationscredit.com"
<darren.mccarthy@nationscredit.com>,
David W Brown
<dbrown@sophia.smith.edu>,
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Weber <donalin@alaska.net>,
Greg Hanavan
<hanavan_gssk@msn.com>,
Jeff & Linda
Monnot <ffej@interx.com>,
John Taglieri
<"john taglieri"@nationscredit.com>,
Olivia Case
Ayers <Ocase0130@aol.com>,
Keith Whit <kbwhit@foothill.net>,
Rick Gahn <gahn@prodigy.com>,
Sarah Davis
<Grrrlnightbreed@hotmail.com>,
Scott Raymond
<scott.raymond@nationscredit.com>,
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Gargano <gargano@soon.com>
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From: "The Brooks Family" <fambrooks@earthlink.net>
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Subject: Fw: This is real, please do it!!
Date: Mon, 10 May 1999 09:33:04 -0700
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-----Original Message-----
From: Margie.Herndon@nationscredit.com <Margie.Herndon@nationscredit.com>
To: Tuwanna.Sadler@nationscredit.com <Tuwanna.Sadler@nationscredit.com>;
Pam.Bates@nationscredit.com <Pam.Bates@nationscredit.com>;
Gwen.Smalls@nationscredit.com <Gwen.Smalls@nationscredit.com>;
Jo.Easley@nationscredit.com <Jo.Easley@nationscredit.com>;
Debra.Jenkins@nationscredit.com <Debra.Jenkins@nationscredit.com>;
Johari.Roberts@nationscredit.com <Johari.Roberts@nationscredit.com>;
RUFMLY2@prodigy.net <RUFMLY2@prodigy.net>; OJTBUR@pacbell.net
<OJTBUR@pacbell.net>; houston@littongcs.com <houston@littongcs.com>;
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<knafelgner@lanset.com>; fambrooks@earthlink.net <fambrooks@earthlink.net>;
Julie.Crawford@nationscredit.com <Julie.Crawford@nationscredit.com>;
Kai.Bullock@nationscredit.com <Kai.Bullock@nationscredit.com>;
Trevor.Clarke@nationscredit.com <Trevor.Clarke@nationscredit.com>
Date: Monday, May 10, 1999 9:13 AM
Subject: FW: This is real, please do it!!
>Just trying to share the wealth!
>
>> See below! They say they have checked in to this! JUST
DO IT!
>>
>> THANKS!
>> Beverly A. Cavalli
>> Purchasing x324
>>
>>
>> >>> > >>> Hi guys,
>> >>> > >>>
>> >>> > >>> I never do this type of thing but my
boss sent this
>> >>> > >>> to me and he checked it out personally and here is what
he
>> had to
>> >>> say
>> >>> > >>> about it.
>> >>> > >>>
>> >>> > >>> Good Luck,
>> >>> > >>> Danny
>> >>> > >>>
>> >>> > >>> Guys its true I too called Disney myself...
they are
>> >>> > >>> standing behind it
>> >>> > >>> 100% So send, send, send, send,
okay?
>> >>> > >>>
>> >>> > >>> Folks, I called Disney my self.
It's no lie. GET
>> >>> > >>> IT DONE!
>> >>> > >>>
>> >>> > >>> Disney message & $5,000.00
>> >>> > >>>
>> >>> > >>> If you read below you will see the note
from Walt
>> >>> > >>> Disney Jr. & Management at Disney World. Basically
if this
>> messages
>> >>> > >>> reaches 13,000 people, everyone will receive $5,000.00
or a
>> free,
>> >>> all
>> >>> > >>> expenses paid, trip to Disney World in anytime during
the
>> summer of
>> >>> > 1999.
>> >>> > >>>
>> >>> > >>> See the note below - its worth it!!!!
>> >>> > >>>
>> >>> > >>> Everyone is to resend to 15 individuals.
Please
>> >>> > >>> read and forward to as many friends as possible...we've
>> checked up
>> >>> on
>> >>> > this
>> >>> > >>> and this is no joke of a chain letter or something if
this
>> reaches
>> >>> > 13,000
>> >>> > >>> people...duplicate entries don't count, though...So, please
>> help &
>> >>> > >>> pass on. Thank you, and here you
go!!!
>> >>> > >>>
>> >>> > >>>
>> >>> > >>> WALT DISNEY JR.
>> >>> > >>> GREETING
>> >>> > >>> Hello Disney fans,
>> >>> > >>> And thank you for signing up for Bill
Gates' Beta
>> >>> > >>> Email Tracking. My name is Walt Disney Jr. Here
at Disney
>> we are
>> >>> > working
>> >>> > >>> with Microsoft which has just compiled an e-mail tracing
>> program
>> >>> that
>> >>> > >>> tracks everyone to whom this message is forwarded to.
It
>> does this
>> >>> > >>> through an unique IP (Internet Protocol) address log book
>> database.
>> >>> > >>> We are experimenting with this and need
your help.
>> >>> > >>> *
>> >>> > >>> Forward this to everyone you know and
if it reaches
>> >>> > >>> 13,000 people, 1,300 of the people on the list will receive
>> $5,000,
>> >>> an=
>> >>> > d
>> >>> > >>> the rest will receive a free trip for two to Disney World
>> for one
>> >>> week
>> >>> > >>> during the summer of 1999 at our expense.
Enjoy.
>> >>> > >>> > > >>> >> >> > >>>>>>>>>>> >>> >>>
>> >>> > >>>
>> >>> > >>>
>> >>> > >>
>> >>> > >>
>> >>> > >>
>> >>> > >>
>> >>> > >>
>> >>> > >>
>> >>> > >>
>> >>> >
>> >>> > ----------
>> >>> >
>> >>> > --part2_918093802_boundary--
>> >>> >
>> >>> > --part1_918093802_boundary--
>> >
>>
>>
>> _______________________________________________________________
>> Get Free Email and Do More On The Web. Visit http://www.msn.com
>
--------------00B257D4766D551B7F13F566--
=========================================================================
Date: Thu, 24 Jun 1999
17:46:33 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: Myrtle Beach & A Nasty
Pimple
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Andrea--
Glad to hear everything went okay with the biopsy on your ear.
Thanks for
the info . I didn't realize that radiation from the xrays could
cause skin
cancer. I guess with all the head and face xrays, an ear would be a
likely
place. Can't wait to see those photos. I know you must look fabulous.
Sounds like the recovery process as been very positive.
Brenda
=========================================================================
Date: Thu, 24 Jun 1999
17:46:27 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Welcome to the Fullmers--We are the Sieberts (George, Brenda, Melissa
and
Jonathan (2 yrs. old w/ Aperts) from Houston, TX. It's great
that you met
Kelly. I've met several teenage kids and adults with Aperts at
the medical
centers and find it also to be very inspirational. We just met
another 13 yr
old girl at Medical City, Dallas this week and gave them the information
to
visit our listserv so hopefully they will join us soon. We wish
you well.
Brenda
Houston
=========================================================================
Date: Thu, 24 Jun 1999
15:42:37 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Apert Mail <apertmail@USWEST.NET>
Subject: Re: get togethers
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Any meeting in the Northwest would be good. I know we are going camping
at the
ocean with my mom and dad on the 4th, but living in Oregon, I could
try and make
get togethers... I know we will be up in Seattle July 29th for
Courtneys doctors
appointments.
Dawn
=========================================================================
Date: Thu, 24 Jun 1999
19:10:23 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Laura Maes <RALL98MD@AOL.COM>
Subject: Golden access pass
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Mechelle,
Thanks for the info...but do I just let organizations know indivdually
that I
have a disabled daughter and then ask if they have discounts?
Or is there an
organization that distributes some kind of pass? Documentation
is the easy
part!!!!
Laura
=========================================================================
Date: Thu, 24 Jun 1999
17:00:41 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Introduction
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi Sheryl,
My name is Kelly. I am almost 18 and I have aperts syndrome. I live
in
Roseville, near Concord. I would love to meet you sometime. People
have
told me that I am a real inspiration to them, so if you have any
questions, I would be happy to try and answer them.
Hope to hear from you soon,
Kelly Spadini
=========================================================================
Date: Thu, 24 Jun 1999
17:08:55 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: HI :)
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi Laura,
I am Kelly Spadini, a 17 year old with Aperts syndrome. Where
is Harbor
City in relation to Roseville or Sacremento? I live in
Roseville. I
would strongly suggest that you encourage you friend to join the
listserv. Even though there was nothing like this when I was born,
it
has still helped me through the year I've been on it. I know it has
helped many other new parents too.
Kelly Spadini
=========================================================================
Date: Thu, 24 Jun 1999
17:14:24 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi Fullmers,
I am so glad you joined this listserv. I know it has been really helpful
to all the new parents out there. I really wish there would've been
something like this for my mom and dad when I was born. I think all
they
got was a piece of paper, and like I think my mom said when we met
the
other day, we didn't meet any other people until I was 6. A lot of
these
families have ALREADY met other people with Aperts. Some of there kids
aren't even six yet.
I hope to see you again sometime
Kelly Spadini
=========================================================================
Date: Thu, 24 Jun 1999
21:30:44 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: Introduction
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Sheryl--
Hi, Welcome to our family! Where will you be living when
you get married
next year? You certainly have come to the right place for info/support.
We
wish you the best.
Brenda
Houston
=========================================================================
Date: Thu, 24 Jun 1999
21:40:15 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: Not Myrtle Beach Reunion
but NZ
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Ann-
Good to hear you had a reunion also. It sounds like Amy really
enjoyed it as
I'm sure everyone did. Do you have any photos to share?
Brenda
=========================================================================
Date: Thu, 24 Jun 1999
21:16:42 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Re: addresses etc
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Jeanne,
You can find the addresses at this address
www.apert.org/pictures/addresses
Please send your address to us and I will send you a picture.
I have a 9 yr
old daughter Lisa with Aperts syndrome.
I love this listserv. It is great. I don't always respond
but there is
alot of interesting things that come over the listserv.
New things but you
will find that there are alot of similarities but yet some Aperts have
normal intelligence and in our case Lisa is mildly retarded.
Deb Picht
Marshall, MN
-----Original Message-----
From: TFinch10@AOL.COM <TFinch10@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Thursday, June 24, 1999 9:49 AM
Subject: addresses etc
>Hi All,
>I apologize for being slow..but where can I find the addresses for
the
>picture exchange? With school closing, there is a little slice of
time to
>send ours out. Just wanted to share a small joy--Nate finishes second
grade
>today. We had a meeting with all of his teachers and our once-every-three
>years evaluations. While the pyschologist who did a screening of his
>auditory/visual memory noted that he scored quite low on both, his
teacher
>said that he was one of two kids in her regular ed class to score
100% on a
>math test that covered all of what they'd learned over the year. We
all
>laughed. Obviously Nate has figured out his own ways to adapt and
compensate
>and use what he's got to do what he needs to do! School is not easy
for him
>but he works very hard. These are the moments of pride that every
parent
has
>but feel extra sweet when you know how many struggles are part
of
>it...Warmly, Jeanne in Boston
>
=========================================================================
Date: Fri, 25 Jun 1999
00:24:38 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Subject: Re: Golden access pass
In-Reply-To: Laura Maes <RALL98MD@AOL.COM>'s message of Thu,
24 Jun 1999
19:10:23 EDT
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)
The pass is honered and I assume it can be received through Bureau of
Land Management, Fish and wildlife Service, Bureau of Reclamation,
US
Ary Corps of engineers, Tennessee Valley Authority,National Parks
service, and the Forest Service
I will type what appears on the back of the Golden Access
Passport.........
Pass issued to any citizen or permanent resident of the US who as been
medically determined to be blind or permanently disabled for purposes
of
receiving benefits under Federal Law. Pass valid at Federal entrance
fees areas. Admits passport signee and accompanying passengers
in a
single, private, noncommercial vehicle, or alternatively, passport
signee, spouse, and children where entry is by means other than private,
noncommercial vehicle. Pass is nontransferable and entitles passport
signee ONLY 50% discount on use fees, e.g., camping and cave tours.
Pass is not valid for any special recreation permit fee. Persons
violating a term or condition of this permit may have this passport
seized and may be subject to a fine and/or imprisonment as provided
by
law.
Hope this helps! :))
Mechelle
=========================================================================
Date: Fri, 25 Jun 1999
00:27:08 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Subject: Re: Golden access pass
In-Reply-To: Laura Maes <RALL98MD@AOL.COM>'s message of Thu,
24 Jun 1999
19:10:23 EDT
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)
You will receive an actual pass. It has a wheel chair symbol on
the
front. I suppose that is to show a disability.
Mechelle
=========================================================================
Date: Fri, 25 Jun 1999
02:19:26 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Ignore!
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
There is no such person as Walt Disney, Jr. This is an old hoax!
Sherry Roehl
"Brent E. Young" wrote:
> ------------------------------------------------------------------------
>
> Subject: Fw: This is real, please do it!!
> Date: Mon, 10 May 1999 09:33:04 -0700
> From: "The Brooks Family" <fambrooks@earthlink.net>
> To: "Jeff and Sharon Mizukami" <mizukami1@aol.com>,
> "Lynn Miller" <lmiller@direct.com>,
"Denise Kurp" <DDK825@aol.com>,
> "Schleprock" <beyoung@ix.netcom.com>,
> "Steve and Cindy Pacini" <Pacicy@aol.com>,
> "Mom & Bruno" <bldfam12@aol.com>,
> "Dominic Fontana" <dfontana@inreach.com>
>
> -----Original Message-----
> From: Margie.Herndon@nationscredit.com <Margie.Herndon@nationscredit.com>
> To: Tuwanna.Sadler@nationscredit.com <Tuwanna.Sadler@nationscredit.com>;
> Pam.Bates@nationscredit.com <Pam.Bates@nationscredit.com>;
> Gwen.Smalls@nationscredit.com <Gwen.Smalls@nationscredit.com>;
> Jo.Easley@nationscredit.com <Jo.Easley@nationscredit.com>;
> Debra.Jenkins@nationscredit.com <Debra.Jenkins@nationscredit.com>;
> Johari.Roberts@nationscredit.com <Johari.Roberts@nationscredit.com>;
> RUFMLY2@prodigy.net <RUFMLY2@prodigy.net>; OJTBUR@pacbell.net
> <OJTBUR@pacbell.net>; houston@littongcs.com <houston@littongcs.com>;
> Laurie_Knight@enron.com <Laurie_Knight@enron.com>; knafelgner@lanset.com
> <knafelgner@lanset.com>; fambrooks@earthlink.net <fambrooks@earthlink.net>;
> Julie.Crawford@nationscredit.com <Julie.Crawford@nationscredit.com>;
> Kai.Bullock@nationscredit.com <Kai.Bullock@nationscredit.com>;
> Trevor.Clarke@nationscredit.com <Trevor.Clarke@nationscredit.com>
> Date: Monday, May 10, 1999 9:13 AM
> Subject: FW: This is real, please do it!!
>
> >Just trying to share the wealth!
> >
> >> See below! They say they have checked in to this!
JUST DO IT!
> >>
> >> THANKS!
> >> Beverly A. Cavalli
> >> Purchasing x324
> >>
> >>
> >> >>> > >>> Hi guys,
> >> >>> > >>>
> >> >>> > >>> I never do this type of thing but
my boss sent this
> >> >>> > >>> to me and he checked it out personally and here is what
he
> >> had to
> >> >>> say
> >> >>> > >>> about it.
> >> >>> > >>>
> >> >>> > >>> Good Luck,
> >> >>> > >>> Danny
> >> >>> > >>>
> >> >>> > >>> Guys its true I too called Disney
myself... they are
> >> >>> > >>> standing behind it
> >> >>> > >>> 100% So send, send, send, send,
okay?
> >> >>> > >>>
> >> >>> > >>> Folks, I called Disney my self.
It's no lie. GET
> >> >>> > >>> IT DONE!
> >> >>> > >>>
> >> >>> > >>> Disney message & $5,000.00
> >> >>> > >>>
> >> >>> > >>> If you read below you will see the
note from Walt
> >> >>> > >>> Disney Jr. & Management at Disney World. Basically
if this
> >> messages
> >> >>> > >>> reaches 13,000 people, everyone will receive $5,000.00
or a
> >> free,
> >> >>> all
> >> >>> > >>> expenses paid, trip to Disney World in anytime during
the
> >> summer of
> >> >>> > 1999.
> >> >>> > >>>
> >> >>> > >>> See the note below - its worth it!!!!
> >> >>> > >>>
> >> >>> > >>> Everyone is to resend to 15 individuals.
Please
> >> >>> > >>> read and forward to as many friends as possible...we've
> >> checked up
> >> >