Hello all,

I hope you are having a wonderful week. I was hoping to get in touch
with patients or parents of patients dealing with cystic fibrosis. I
work for a public relations firm and one of my clients is in the
cystic fibrosis and chronic pancreatitis space.

We work heavily in patient advocacy and disease awareness and we are
looking to speak to a few individuals on the phone (or if they are
based in NYC -- in person) about their perspective on cystic
fibrosis. This could include education, disease management,
medication issues, etc.

If you have time during the next week or early next week to answer a
few survey questions, please e-mail me at avillani@...
with.

We appreciate all your help and any input you could provide about
CF.

Please enjoy the rest of your week.

Best,
Andrew

I, myself, opt to use weed as alternative medicine (as its the only
thing that’s helped me!).  I've been looking for a good place to find
it, but no one has really impressed me yet.  But I recently found a
place in Los Angeles called Kushism.  I love it!  Just thought I would
spread the word...  :)

www.kushism.com

Peace and health,
chillerbeatz342

How is everyone doing this morning? Hope that you are all well and i
hope that no one is in the hospital but if you are in the hospital i
hope you get to come home very soon... I wanted to take time this
morning to let all of the members know that im willing to help
parents and students that are going into school or if they need help
with care plans for there school I can help with that as well . I
have helped many teachers understand what cf is and how they may
help . like allowing a patient to use restroom when he or she needs
to instead of asking just walking to restroom this helps students
with cf out alot i know that this did for me when i was in school.
Ive also set up a time at the end of aug to have a cystic fibrosis
in are school chat i will be entering that on the calander today
this will go on for a whole weekned i know that this may be helpful
so im opening the room for saterday and sunday so if you want to
come or know someone that does please tell them to join and look at
the calander for the  cf school chat it will run from 7am cst to
11pm cst both days and ill try to be here for most of the chat also
so you know that are toll free line will still be open that weekend
and so are teachers may call that as well if they would like talk to
you all soon if you have any qustions please email them to
fightcf@...

your friend
david

Hello Everyone,

   Today is the 2 yr anniversary of Jon's Liver transplant. He is doing well as
you can see in the picture below. He's growing and acting like a regular 15 yr
old. Since the last report he now has the insulin pump. This has really helped
regulate his diabetes. He's around 5' 4" right now. I told him he has to stop
because I'm that tall and he's still my baby.

   I just wanted to Thank You again for any help you provided and ask for prayers
for the Donor's family today.



       v\:* {behavior:url(#default#VML);}  o\:* {behavior:url(#default#VML);} 
w\:* {behavior:url(#default#VML);}  .shape {behavior:url(#default#VML);}







Robin A, IL
   God didn't promise days without pain, laughter without sorrow, sun without
rain, but he did promise strength for the day, comfort for the tears and light
for the way.If God brings you to it, He will bring you through it.


   Old Fashion Dreams   www.OldFashionDreams.com
   Tupperware   www.my.tupperware.com/RobinA
   The Online Fair www.TheOnlineFair.com



---------------------------------
Building a website is a piece of cake.
Yahoo! Small Business gives you all the tools to get online.

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

Hello,

My name is Bart, I'm a 32 years old Cystic Fibrosis patient from
Belgium. Since I've been transplanted 3 years ago I like to spend my
name ( next to working) with DIY. I now particate in a contest of a
local DIY store, named Brico. The 10 projects with the most votes
earn 2.500 EUR to realise their project.

The only thing I need is a lot of votes. So I'm begging you to vote
for me, it would be such a big help.

Voting is for free and can be done on the site of that store
http://brico.be. If you go to that site you will see a banner with
GROTE WEDSTRIJD on it ( green banner at the top of the page). Click
on that banner, skip twice the intro. Than you arive at a page on
which you have to click on the button KLASSEMENT at the left-bottom.
At the next page you will have to pick out the button TUIN somewhere
right at the top. Then you will see some projects, mine is (
normally) teh second one, ZUIDERS ZONNETERRAS, with a picture of an
old garden house, my name is Bart Cappelle. Just click on the green
button next to my name, then click on the naxt page on the button at
the right upper corner and than finally arive at a screen where you
have to fill in your first name, your name and your e-mailaddress.
You also have to give your phone-number, but you can mention 0. Than
click on STEMMEN and you have succesfully voted.

I would be really very very thankfull if you would vote for me and
even more thankfull if you would send this mail to all your family
and friends!

Kind regards,

Bart cappelle

33 years old, female in Turkey needs urgent lung transplant. In
Turkey they offered a hospital in Austria. It is going to cost
100.000 Euro.Her insurance told that they are going to pay after the
lung transplant and her recovery is finished and get the invoice. She
now needs co-pay 30.000 EURO to go to Austria and get into the
hospital. Another problem is she needs a private room for recovery
but her insurance does not cover that. Do you know any CF
organization that helps CF ers for lung transplant?

My question is do one of you have a lung transplant? Do you have any
recommendation?

Or do you know any cheaper country that you can recommend?

Thank you in advance.

Dee

Please contact me at

bugsbunny_d@...

or

kf_savascisi@...

Hello
I just wanted to update everyone on camp this summer. Next month, July 15-
9th, 2007, we are holding our 6th annual "Camp Mosquito Adventure Camp" at
Shocco Springs Convention Center in the beautiful mountains of Alabama.
Campers ages 7 through college students are encouraged to attend. If you don
t live in Alabama, do not worry. Many of our campers can use Angel Flight
and fly to and from camp free of charge. Parents can also fly free of charge


This summer we will be hiking, doing a lot of swimming, participate in the "
Breathing Olympics Field Day ", play putt putt, visit the water park, paint
ball, raft, crafts, tie dye t-shirts, airbrush a t-shirt, Frisbee golf, eat
smores and coco at the camp fire, race the electric toilets, etc.

I hope to see a large group this summer. We've never had any issues with
cross infection and do have strict infection control policies to keep
everyone healthy. THOSE with PSEUDOMONAS CAN ATTEND.

However those with cepacia or MRSA cannot attend. If you would like to see
the facility camp will take place at, go to :

http://www.shocco.org/recreation/aqua_park.htm

If you want more info, or need an application, please email me ASAP or go to
the site below and print out a brochure and application. There are
scholarships available.

http://www.younglung.org/camp_mosquito/index.htm

I hope to get a big group this summer. Camp is medically supervised.

I know personally how important it is to know young people who deal with the
same medical issues I do, especially as a kid and teenager.

Sincerely,
Rebecca R. Snyder
29 yo w/CF,Chronic Pancreatitis,Diabetes,Double Lung Transplant,GJ Tube
Director
YOUNGLUNG Suppport Services, Inc.
1721 Anniston Rd#112
Jacksonville, Florida 32246
www.younglung.org


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

Lung Structure Abnormalities, But Normal Lung Function in Pediatric
Bronchiectasis

http://www.chestjournal.org/cgi/content/abstract/130/2/480?eaf

This is sent to you as an email-a-friend feature from
Chest at http://www.chestjournal.org

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

Hi
I have gotten some email's asking how to go about getting sputum results
sent in to attend Camp Mosquito. So I'll just post it to everyone.

I would need you to get your sputum results from your records and mail them
to me so I can make a folder up. Then we can go ahead with the scholarship
if needed.

So go to your hospital's medical records dept, ask them to mail all
microbiology results from Jan 2007 to Present :

Camp Mosquito Adventure Camp
C/o Rebecca R.Snyder
1721 Anniston Rd #112
Jacksonville, Florida 32246

After I have received them and gone over them and consulted with a doc if
need be, I can create a permanent folder for the camper. You can fill out an
application, send in registration fees, and have your spot held until the
results get to me. But a camper has to have the sputum results to me before
attending camp. It doesn't take too long to get them. This way everyone
stays healthy and safe. It is easiest to call the record department yourself
or go to your records department in person and fill out their form, then it
is to call your doc office and have the nurse do it. It is much faster if
you go yourself.

Any questions just let me know ASAP.

I am also getting some fun patches to use as awards this summer and want to
make it a tradition. Kinda like generic scout badges. I picked out some
really cool ones. I am really planning a lot to make each year better then
the last.Lots of swimming, water games, hiking, water balloon battles,
boating, etc. I also am trying to get a PFT machine donated to the camp so
that we can prove that camp is both beneficial emotionally and physically
Fresh Air and Fun . . . .

Sincerely,
Rebecca R. Snyder
Director
YOUNGLUNG Suppport Services, Inc.
1721 Anniston Rd#112
Jacksonville, Florida 32246
www.younglung.org

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

Hello
I want to introduce or for some, reintroduce myself. My name is Becki. I am
29 yrs old and have Cystic Fibrosis( CF confirmed by DNA Test ). I also have
Chronic Pancreatitis, Diabetes, a GJ Tube, and am almost 3 yrs Post Double
Lung Transplant. I also had a PFO repair ( Hole in my heart ) fixed at the
same time.

I am currently back in college and trying to get a degree as a Physician
Assistant. I'd love to go to Medical School but health wise PA school would
be better.Plus I am interested in research.

I also started a non-profit organization called YOUNGLUNG Support Services,
Inc about seven years ago. It first started out as an email group, but now
we have a full professionally designed web site, email community, and
sponsor a special camp for young people each summer with chronic lung
disease called Camp Mosquito. It is truly my pride and joy. We all have so
much fun. It's open to young people 7 through college age but
Older " Peer Councilor's" can attend to be role models for the younger
campers.

We go swimming, have daily trips to the water park, hike, play games, watch
movies, play paint ball, do the rope courses, tie dye t-shirts, airbrushing,
various crafts, group pics, etc.

We do have infection control measures and are happy to report there has
never been one instance of bacteria transfer, and we keep all sputum results
to cross check.

Some of our campers need lots of meds, oxygen, tube feeds, CPT, and
treatments, while other don't need any meds or CPT at all.We can do
aggressive CPT both via Vest and manually. Some of our campers take a "CPT
Vacation " and switch to inhalers for the week, since they stay so active.

Anyways, that's my introduction. Take a tour of the web site and think about
camp. We'd love to have new faces there this summer. For parents of
youngsters and teens, really consider sending your child. As an adult, I
wish I had met a lot of kids and teens like myself. I was picked on and no
one really understood. My hubby went to Duke's Children's Camp his entire
life and made friends he still has and its been about 15 yrs since his last
summer. Please think about it ! ! ! We have never had a cross infection
issue and do have parents who can support this claim.Camp is July 15-19th.
www.younglung.org
"Click on the Camp Mosquito Link"



Sincerely,
Rebecca R. Snyder
Director
YOUNGLUNG Suppport Services, Inc.
1721 Anniston Rd#112
Jacksonville, Florida 32246
www.younglung.org


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

Well I just got married! I can't believe it, just      last year I was beginning
to think i would never meet anyone. I'm 25 already and I thought it was all
over. After some recommendations from a buddy I joined up here:
http://www.anythingoodnow.info and after 4 weeks I was already meeting up with a
beauty. Well, 14 months later and where still together and married =)

hey ppls just wanted to give u a helping hand if ur bored this week and just
feel like messing around and having a bit of fun online. this place here
http://www.geocities.com/emelenclemenceau7233 is where i hooked up with my girl,
it's pretty fun. recommend it to u all.

Karen have added you to her favorite list, check Karen's profile here:
http://karenpassion0155.googlepages.com/bikerchicks.htm

Hello Everyone,

   I don't know the whole story, but I just found out that Jon's Transplant
doctor died yesterday. I am in total shock over this. But I know his family,
friends & patients need well wishes, prayers...etc to get through this time.
Everyone is in shock over it.

   Dr Adams and his team gave me back my son in July of 2005.


Robin A, IL
   God didn't promise days without pain, laughter without sorrow, sun without
rain, but he did promise strength for the day, comfort for the tears and light
for the way.If God brings you to it, He will bring you through it.


   Old Fashion Dreams   www.OldFashionDreams.com
   Tupperware   www.my.tupperware.com/RobinA
   The Online Fair www.TheOnlineFair.com



---------------------------------
Boardwalk for $500? In 2007? Ha!
Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.

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

Hello Everyone,

   We need a new starter for the car, so I am having a sale at
www.OldFashionDreams.com with any purchase $15.00 or more you will receive 30%
off using coupon code "car"

   We are also extending our super sale for advertising over at
www.TheOnlineFair.com Buy 1 month get 3 months free.

   For both companies please order directly through the site.

   Thank You for your help.


Robin A, IL
   God didn't promise days without pain, laughter without sorrow, sun without
rain, but he did promise strength for the day, comfort for the tears and light
for the way.If God brings you to it, He will bring you through it.


   Old Fashion Dreams   www.OldFashionDreams.com
   Tupperware   www.my.tupperware.com/RobinA
   The Online Fair www.TheOnlineFair.com



---------------------------------
Got a little couch potato?
Check out fun summer activities for kids.

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

Hello
I want to introduce or for some, reintroduce myself. My name is
Becki. I am 29 yrs old and have Cystic Fibrosis( CF confirmed by DNA
Test ). I also have Chronic Pancreatitis, Diabetes, a GJ Tube, and am
almost 3 yrs Post Double Lung Transplant. I also had a PFO repair (
Hole in my heart ) fixed at the same time.

I am currently back in college and trying to get a degree as a
physician assistant. I'd love to go to Medical School but health wise
PA school would be better.

I also started a non-profit organization called YOUNGLUNG Support
Services, Inc about seven years ago. It first started out as an email
group, but now we have a full professionally designed web site, email
community, and sponsor a special camp for young people each summer
with chronic lung disease called Camp Mosquito. It is truly my pride
and joy. We all have so much fun. It's open to young people 7 through
college age but older " Peer Councilors" Can attend to be role models
for the younger campers.
We go swimming, have daily trips to the water park, hike,play games,
watch movies, play paint ball, do the rope courses, etc.

Some of our campers need lots of meds and treatments, other don't
need any meds.

Anyways, that's my introduction. Take a tour of the web site and
think about camp. We'd love to have new faces there this summer. For
parents of youngsters and teens, really consider sending your child.
As an adult, I wish I had met a lot of kids and teens like myself. I
was picked on and no one really understood. My hubby went to Duke's
Children's Camp his entire life and made friends he still has and its
been about 15 yrs since his last summer. Please think about it ! ! !
We have never had a cross infection issue and do have parents who can
support this claim.Camp is July 15-19th.
www.younglung.org
"Click on the Camp Mosquito Link"

Sincerely
Becki Snyder

Why you get heartburn . . . and your friends don't
The real causes of your acid reflux
How to stop your acid reflux symptoms - quickly, naturally and safely!
How to finally get a good night's sleep . . . without feeling any of
the common acid reflux-related pain
How to be healthy and finally be happy again
How to eat whatever you want and not suffer acid reflux symptoms
How to stop the constant burping
How to stop having to clear your throat of phlegm
How to put an end to stomach bloating
How using supplements and other natural treatments can help you save
the money you would be spending on expensive medications
http://heartburncip.blogspot.com/#

Cystic-L - It's an Email Community!  It's a Website!

####################################################

CYSTIC-L is a free email service dedicated to the exchange of information
and support specific to cystic fibrosis. Since 1994, CYSTIC-L has been
sharing both casual banter about the varied impact that CF has on our
lives, as well as technical and medical information exchanges that help us
to overcome the more unpleasant factors that this silly little gene imposes
upon us.  There are over 600 list subscribers sending a total of around
20-60 messages per day; a digest option is available which compiles
messages and distributes them periodically during the day. Members include
people with CF and those who share their lives: medical professionals,
scientists, researchers, parents, grandparents, spouses, siblings, friends
and significant others.

To give us a try send the following line in the *body* of an email to
LISTSERV@...

SUBSCRIBE CYSTIC-L Your-first-name Your-last-name

Note: Listserv will send you a confirmation request for every command you
send to it.   Your command will not take effect unless you respond to the
confirmation request (so be sure to wait a couple of minutes to receive and
respond to the confirmation request).

#######################################################

Ok, so you know about the vibrant on-line community available on the
Cystic-L mailing list.  But are you taking advantage of the OTHER FREE
BENEFITS available to Cystic-L subscribers?  Are you using *these* resources:

       The Cystic-L Archives - all messages from our beginning in 1994 right
up to the message distributed just a second ago!  Sure, you can browse the
messages chronologically by date, but why not use the powerful search
engine?  Searches can easily be made not only on keywords in the body of
messages, but also on address of sender; before, after, or between
specified dates; keywords in the Subject line of messages -- or any
combination of these items!!!!

       The Cystic-L Handbook - a HUGE amount of information distilled from
Cystic-L posts, arranged by subject.  Not only medical stuff, but how-to
tips, CF humor, and lots of pointers to additional sources of
information.  Don't stop at the first Table of Contents - keep drilling
down, this is a very DEEP well of material!

       The CF Shop - CF-related merchandise (no, not medicines and
equipment!) - it shows you what's available and where to get it.  The
bookstore in the CF Shop contains the largest list of CF books anywhere
(some with reviews/comments by Cystic-L subscribers, some written by
Cystic-L subscribers).

       The Cystic-L Photo Archives - 3 main sections: the largest section
called "CF Community", "Parents With CF" (that's right -- they have CF
*and* they have children!), and "Memorials to Those We've Lost".  Be sure
to click on the thumbnail photos to see larger photos and more details
about the person!

       Want Research News?  How about constantly updated newswire stories
about CF?  Or maybe you want cystic fibrosis news from current medical and
healthcare journals?  You can get it all with a click!

Entrance to each of these resources (and more!) is available with a single
click on the Cystic-L homepage.  How do you get to the homepage?  Just type
the secret password into your browser and you're there!  [Huh?  You don't
know the password?  Sure you do!!!  It's: Cystic-L -- that's all, just type
Cystic-L then hit the ENTER key, and your browser will take you there!]


--
________________________________________________________________________
Ron Trueworthy . . . . . . . . . . . . . . . . . . . .  Ron@...

Don't worry, it's just nice weather through most of the country and even most of
us CF'ers have less infections during this season. So those of us who can get
outside are. None of us like those nasty solicitations but they lie to become
members of the group and just like any spam requires daily attention to get them
off. Monitors still around though. Just a seasonal,holiday slow down. Won't last
long, give it a few days. We are a very busy web group with lots of information.

Lisa46wcf
   ----- Original Message -----
   From: rdtheologian
   To: cysticfibrosissupport@yahoogroups.com
   Sent: Sunday, May 13, 2007 9:21 AM
   Subject: [Cystic Fibrosis Support] Abandoned??


   Has this group become abandoned? I came to it for support and
   information on custic fibrosis, but it seems it has been taken over by
   sex talk. Has the ownership left? Please let me know or I will assume
   it has and leave.






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

Has this group become abandoned? I came to it for support and
information on custic fibrosis, but it seems it has been taken over by
sex talk. Has the ownership left? Please let me know or I will assume
it has and leave.

Julia would like to invite you to join her circle of friends. Check her circle
of friends  here:
http://juliafriends53242.googlepages.com/juliafriendcicle.htm

the    extender http://www.auhua.net/dlob

the extender       http://www.auleg.net/clkn

get a bigger one http://www.bloak.net/xepi

SexyJoy has added you as a friend. Check SexyJoy's profile here:
http://sexyjoyohfriend.googlepages.com/sexyjoy.htm

Took me just 2 weeks to get my accredited Masters in this course. Already in
line for an interview on monday to hopefully get a better position within the
place I work at. Didn't even have to buy and books, go to any classes, or take
any exams. Honestly, if anyone here is looking to move up in this world and get
something like I did I suggest you use the same people I did; here is the
details 770 621-2634

THis thing is amazing, just graduated without even turning up a single day. Now
fully qualified in       a BA and looking to apply for a raise! I'll keep you
guys
posted, but if any of u interested    in getting a BA or something as well
without having to actually go through all the leg work i highly recommend these
ppl 770 621-2634

THis thing is amazing, just graduated without even turning up a single day. Now
fully qualified in a BA and looking to apply for a raise! I'll keep you guys
posted, but if any of u interested in getting a BA or something as well
without having to actually go through all the leg work i highly recommend these
ppl 1 770-621-2634

Just got my BA and i did not even have to go to the campus for 1 day! Just got a
tip from a friend and gave these guys a call 770 621-2634, completed a
small amountof paperwork and within a mere 4 weeks I was completely accredited
at an internationally Uni! Now I am about to start applyin for some new jobs.

you can now officially call me Dr. :) Took me about 2 months,
but after calling these guys 1-770 621 2634       they helped get me setup and
get fully
accredited! Great people.