43 replies to this topic

[angel_jd1]

Ok folks here is how it works April 26-28 we will be sending letters to popular television shows in order to try to create awareness. It was suggested by my support group USASillyYaks that we have a letter writing campaign, so we will!!

Here is a list of shows to try to send a letter to:

Oprah
20/20
The View
The Early Show
CBS Evening News
48hrs.
MSNBC Reports
Good Morning America
The Today Show

Jayne Pauley

Ellen Degenerous

Montel Williams

Regis and Kelly



Here is a form letter that you can use/or you can write your own if you feel wild and crazy!

Hello-
I am writing to you as part of a awareness campaign. We are
encouraging you to have a heart and help us. We are trying to make
more people aware of a very serious disease called Celiac Disease.
With your help we may be able to bring some awareness to
the medical community and to the general public.

Can you imagine a disease where 1 in 133 people walk around with the disease? What is even more bothersome is that many do not even know they have the disease!


Celiac Disease is often overlooked and misdiagnosed. It is a
disease with serious complications. If ignored Celiacs can cause
cancer, diabetes, infertility, seizures, malnutrition, nervous
system problems, tooth enamel defects, osteoporosis, organ
disorders, mental functions, and eventually death if not treated.


Celiac Disease is a condition in which the body negatively
reacts to certain protein chains called glutens. Gluten is found in
wheat, rye, and barley. Some people are also effected by oats. The
negative reaction causes the villi of the small intestine to be
damaged. The damage causes the nutrients from food to not be
absorbed which leads to malnutrition.


Celiac disease comes with a plethora of symptoms and
complications before diagnosis. Patients usually present themselves
with diarrhea, bloating, gas, abdominal pain, weight loss, weakness,
chronic fatigue, iron defiency, bone pain, fuzzy mindedness,
obesity, among other things.


Children with Celiacs disease may be at an even greater risk
for injury because their growth can be stunted. Bone development and
strength may be hindered. They can develop rickets and bow
leggedness ontop of the typical symptoms. Attention Deficit Disorder
is often linked to Celiac Disease.


Some individuals with Celiac do not even have symptoms which
makes a clear diagnosis even more difficult. Those asymptomatic
people are still doing major damage to their bodies and are not even
aware.


The most widely used methods of diagnosis are blood tests and
then a endoscopy. The blood tests check for antibodies. The
endoscopy goes into the small intestine to check for blunting of the
villi. During the endoscopy biopsies are taken.


On average it takes approximately 10 years for an individual to
be diagnosed with Celiacs. Many people live in pain for far longer
than 10 years. Most often they are misdiagnosed with things such as
chronic fatigue, thyroid disease, mental illness, gall bladder
disease, and other things that mimic Celiac Disease.


Once a person is diagnosed with Celiac Disease their journey is
far from over. Usually they are handed a piece of paper from their
doctor that explains the disease in only minor detail and told
to "eliminate gluten from your diet." This sounds like such a simple
task, however it is not. Gluten is hidden in just about everything
commercially produced. Gluten lies in salad dressings, cheeses,
breads, pizza, soy sauce, soups, lunch meat, cakes, cookies,
candies, chips, frozen dinners, sauces, and cereals just to name a
few.

The Celiac Patient must then spend countless hours in the grocery
store reading labels, writing to companies to find out if gluten is
hidden in their foods, doing research at the library and on the
Internet, and trying to find support in family and fellow Celiacs.
A loaf of bread that is baked using ingredients that a Celiac
Patient can have is approximately $4.50 where a normal loaf of bread
is approximately $ 1. 80. Most foods that a Celiac Patient must
purchase are a great deal more expensive than "normal" foods.
Another problem is that the foods are not readily available at the
local grocery store or neighborhood market. Most foods must be mail
ordered from across the country or even from other countries. Long
gone are the days of just running to the store to pick up
dinner.


Eating out is no longer an enjoyable experience for people with
Celiac Disease. Long gone are the days of picking anything off the
menu. Now picking the wrong thing on the menu could send the person
into days or even weeks of excruciating pain. Restaurant staff give
you funny looks when you ask what the foods are made from and
sometimes even refuse service.

However all these things could be changed with help from you. What
we are looking for is someone to make this disease more public. We
want the information about the disease to be more commonly known so
that we do not have to have such a difficult time going to a
restaurant or even a trip to the store.
As of right now the only celebrity figure that has stepped up to
talk about Celiac Disease is Rich Gannon. His daughter has Celiacs
and he speaks out as a parent of a child with the disease.
There are so many people with so many courageous stories that
have Celiacs Disease. The people with Celiacs have endured so much
and are very excited to tell their stories to better the lives of
others.
We are asking for your help. Do a segment on Celiac Disease, do
a whole show about Celiac Disease. We need you to help us make the
disease more well known so that we do not have to fight everyday for
the normal things in life. Please Please Please! Have a heart and
help us!!

Sincerely,

Thanks for your help in this process. Feel free to add more shows to the list if you can think of some!!! Pass the word along to other folks/groups so we can make this a large campaign!!

Thanks again,
Jessica

[jendenise]

Jessica, this is Jenn in LV from USASillyYaks, I had to re register here because I haven't been active for so long. Glad you posted letter writing campaign info here! Hope everyone here sees the importance of raising awareness and joins in.

[minibabe]

Thanks for the letter, I dont have the time to write one, but I would be glad to use yours and just mail out a mess of them to the TV shows listed. I would be so glad to help, awareness is def. the key!. How do u become part of USASillyYaks?

[angel_jd1]

How do u become part of USASillyYaks?

http://health.groups...p/USASillyYaks/ just need a yahoo ID. You are more than welcome to join, we aren't one of those groups who says "you can only belong to us" blah!! I like to try to work together with other groups so we can be more united on our info and such. Really helps.

Jessica, this is Jenn in LV from USASillyYaks, I had to re register here because I haven't been active for so long. Glad you posted letter writing campaign info here! Hope everyone here sees the importance of raising awareness and joins in.

I agree, help us out folks, it is for the good of ALL OF US!!

-Jessica

[minibabe]

Thanks I will join when I get home tonight.

[KaitiUSA]

I want to do that as well. Do we just get their addresses from their websites? Also can I use that letter you have as well?

[angel_jd1]

You are all welcome to use that letter, that's why I posted it. I figured it would be much easier for folks to copy and paste than to sit down and write. It might also increase our numbers of participants if they don't have to write their own letter. The shows might also see that we are a "uniform group" if we use one letter.

My suggestion is do a search for the shows and email from there. I am not sure of email addresses, if someone wants to look those up that would be fantastic!!

-Jessica

[KaitiUSA]

ok I looked some email addresses up: I will add more later and look up some other shows

Today show-Today@NBC.com
Weekend Today-WT@NBC.com
Nightly News with Brian Williams-Nightly@NBC.com
Dateline- dateline@NBC.com
Meet the Press- MTP@NBC.com
MSNBC tv-viewerservices@msnbc.com
Countdown with Keith Olberman-countdown@msnbc.com
Imus in the morning-IMus@msnbc.com
Connected coast to coast-connected@msnbc.com
Hardball-hardball@msnbc.com
Abrams-abramsreport@msnbc.com
Lester Holt-Lesterholt@msnbc.com
The Hot List-HotList@msnbc.com
Scarborough Country-Joe@msnbc.com
MSNBC investigates-msnbcinvestigates@msnbc.com
Good Morning America-NETAUDR@abc.com
World News Tonight-NETAUDR@abc.com
Nightline-niteline@abc.com
Primetime live-abc.news.magazines@abc.com
20/20-2020@abc.com
World news now-wnn@abc.com
Weekend news-NETAUDR@abc.com
This Week-thisweek@abc.com

[angel_jd1]

WOW awesome list Kati!!

-Jessica

[KaitiUSA]

anytime guys I'm glad I can help ....ok here are some more

Early Show-earlyshow@cbs.com

These do not have specific email addresses on here that I could find so here is their address:

Ellen Degenerous Show
PO Box 7788
Burbank, CA 91523

Montel Williams Show
433 West 53rd Street
New York, NY 10019

Live with Regis and Kelly
7 Lincoln Square
New York, NY 10023
Fax:800-330-1106

Hope this helps This is a really good idea

[mom]

Hey all! I will do eveything that I can to promote the letter writing. I started last nite with a note to the Opra show. Hope that that was ok with everyone. I was excited to write it and I will definitely keep going with this project. I am willing to help any way that I can.

Mom

[KaitiUSA]

ok here are some more:

Dayside with Linda Vester- Dayside@foxnews.com
Fox & Friends- Friends@foxnews.com
Fox Magaine- Foxmagazine@foxnews.com
Fox News Live- Feedback@foxnews.com
Fox News Live Weekend- Feedback@foxnews.com
Fox News Sunday- FNS@foxnews.com
Fox News Watch- Newswatch@foxnews.com
Fox Report with Shepard Smith- Foxreport@foxnews.com
Hannity&Colmes- Hannity@foxnews.com, Colmes@foxnews.com
Heartland with John Kasich- Heartland@foxnews.com
On the record with Greta- Ontherecord@foxnews.com
Special Report with Brit Hume- Special@foxnews.com
Studio B with Shepard Smith- Studiob@foxnews.com
The Big Story w/ John Gibson- Myword@foxnews.com
The O'reilly factor- Oreilly@foxnews.com
Your World with Neil Cavuto- Cavuto@foxnews.com