My letters to Rosie and Oprah

[Guest guest]

First, Robin your letter is great. Second whom else should we write to

besides Rosie, Oprah and Montel . Should we write to Sally Jessie

Raphael, Jennie, or whom? I haven't caught a glimse of these shows for a

while so don't know. What about 20/20 and those kinds? I think dura mater

may help catch their interest.

<< From: SBarwick@...

Hi Robin

Write to Montel ...he write back right away...

Montel

433 W. 53rd St

New York, New York 10019 >>

[Guest guest]

In a message dated 98-10-24 16:59:49 EDT, you write:

<<

Janet (Cookie),

Thank you and please anyone use parts or all of the letters that you want.

Thats why I sent them through.

Robin >>

Thanks Robin. Will do. Going to make cofe now. LOL

Janet

[Guest guest]

Hi All,

Here are my letters that I am sending through the Post Office (imagine

that) to Oprah and Rosie. Feel free to use any of the ideas. This was put

on by my new found skill of cutting and pasting too! Robin

_______________________________________________________________________

NBC Studios

30 Rockefeller Plaza

Suite 800E

New York, NY 10112

Dear Ms. O'Donnell

I am Robin Hawkins and I am writing to ask a few things of you.

My Mother died of a relatively unknown fatal brain disease called

Cruetzfeldt-Jakob Disease almost a year ago. This disease is much like

alzheimers only much much faster. It takes a very bright, sharp person and

reduces them to a vegetable in a very short time. With my mother it was 55

short days. She woke up one morning not being able to see well and it was

downhill after that. It is the human form of Mad Cow Disease. There are

no treatments or cures for it. There are a couple tests that can be done

and they are 95% accurate. Usually the process of elimination diagnoses

it. Every regular test that is taken comes back ok. The agent that causes

this disease is not recognized in the body as an infection so the body

doesn't really fight against it. There are no fevers or infections.

There are three ways to get this disease.

1. Sporadically…. Meaning no one knows how it is gotten.

2. Iatrongenic…..Meaning getting it through medical treatments. Human

Growth Hormone treatments, contaminated surgical instruments, or corneal

transplants or dura mater from a cadaver that was infected with cjd.

3. Familial…10 to 15 percent of cjd cased are inherited. These

familial cases exhibit a mutation in the

gene coding.

When my Mother was dying from this disease there were no groups that we

knew of to get support from. Early this year my sister and I purchased

computers to be able to correspond with others who had been affected by

CJD. We found a wonderful internet group called CJD Voice. Address:

http://members.aol.com/larmstr853/cjdvoice/cjdvoice.htm.

This group was started by three individuals, two who lost spouses and one

that lost a father. Since then there have three more groups spun off from

this site. The Faces of CJD:

http://members.aol.com/stacy91434/cjd/cjd.htm.

And

CJDWatch: http://www.geocities.com/HotSprings/Resort/3754/watch/watch.htm.

And

Blood Recall/Withdrawal-CJD: http://members.aol.com/debbieoney/blood.htm.

Each plays a very important role. CJD Voice is an e-mail and support

group. Some people have signed on who have lost a loved one to cjd 5 to 10

years prior and feel comforted because they finally have someone to talk to

went through the same thing. Many people also come to ask questions that

their doctors can't answer and we help them in anyway possible.

The Faces of CJD tells the symptoms of the disease for caregivers, doctors

and scientists. It tells the stories to the world. My Mothers story is

Donna Jean Burgette.

CJD Watch is to show where the victims have died from cjd. It is a very

powerful site because it shows where there have been clusters of cases

within a state. That might help to figure out a reason why.

Blood-CJD is a place to go for people who have received blood

recall/withdrawal notifications because the blood products they or their

children received came form a donor pool which included a member who died

of CJD or was at risk for it. It is also an e-mail support group. For

example people could have received this blood through invitro-fertilization

to get pregnant.

One thing I would like to ask you to do is somehow mention these sites on

your show? An idea I have is if you could start mentioning interesting

internet sites, especially children's ones and promote the internet as a

good useful and resourceful tool.

We want to reach as many people as possible who have been affected by CJD.

The Center for Disease Control claims or would like us to believe that

there is only one in a million cases of this. We feel this is totally

underestimated. On August 26th Public Eye broadcasted a show on

Cruetzfeldt-Jakob Disease and also mentioned our web site, two minutes

after the show stopped airing our chatroom was packed full of people who

had a loved-one die from this horrendous disease. The more cases we find

to put on our CJD watch site the more we can show that it is more than one

in a million and then more research money will go towards it and also we

can get it to become mandatorily reportable. It is now only in a few

states.

Another thing I would like to ask. Have you ever thought of donating the

computers that you are replacing? We have people who would like to have

internet access but can't afford a computer. We have others that have an

old one that needs updating, low power and low RAM. Would you please

consider us if you ever plan to do that?

I hope to hear from you.

Sincerely yours

_________________________________________________________________________

[Guest guest]

Actually, Lynette is much more knowledgable about dura mater than I am.

Lynette, will you send something through?

<< Having one myself Janet.

Another thought everyone, when we write more letters, lets add more about

the dura mater. I would have but I wanted to get it to the mailbox today.

Debbie would you please send something through that we all can include in

our letters that have all the points about dura mater?

Thanks

Robin >>

[Guest guest]

Janet (Cookie),

Thank you and please anyone use parts or all of the letters that you want.

Thats why I sent them through.

Robin

----------

> From: BetThePony@...

> To: cjdvoice (AT) onelist (DOT) com

> Subject: Re: My letters to Rosie and Oprah

> Date: Saturday, October 24, 1998 3:43 PM

>

> From: BetThePony@...

>

> Hi Robin,

> Great letter!!!! You sure do know how to get your point across.

Would

> it be okay for me to copy & paste parts of your letter? I'm that good at

> writing.

> Keep up the good work.

> Janet

>

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

>

[Guest guest]

Having one myself Janet.

Another thought everyone, when we write more letters, lets add more about

the dura mater. I would have but I wanted to get it to the mailbox today.

Debbie would you please send something through that we all can include in

our letters that have all the points about dura mater?

Thanks

Robin

----------

> From: BetThePony@...

> To: cjdvoice (AT) onelist (DOT) com

> Subject: Re: My letters to Rosie and Oprah

> Date: Saturday, October 24, 1998 4:06 PM

>

> From: BetThePony@...

>

> In a message dated 98-10-24 16:59:49 EDT, you write:

>

> <<

>

> Janet (Cookie),

>

> Thank you and please anyone use parts or all of the letters that you

want.

> Thats why I sent them through.

>

> Robin >>

> Thanks Robin. Will do. Going to make cofe now. LOL

> Janet

>

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

>

[Guest guest]

Between us all, we know " stacks " about dura mater. If it's OK with

everyone, I would rather wait until next Tuesday, when I have an 18 hour

wait in Bangkok for my flight to Hyderabad, to put the first draft together

for the article Debbie and I plan to send to The Lancet. I'm a little too

stressed out with the overload of the past few weeks to think clearly

today, my last in Melbourne for 6 weeks.

And a big thanks to everyone for sharing all their information.

Best wishes to all, Lynette.

PS: Debbie, if you have read any of the GSN posts on signatures etc, you

might care to explain the double-bind of these niceties to CJD Voice. It

DOES really get me at times., after posting the most dire of messages, to

then find myself virtually writing " have a nice day " - in effect, I feel

it's ME who has made sure the day will not be NICE!

At 05:30 PM 10/24/98 EDT, you wrote:

>From: DebbieOney@...

>

>Actually, Lynette is much more knowledgable about dura mater than I am.

>Lynette, will you send something through?

>

><< Having one myself Janet.

>

> Another thought everyone, when we write more letters, lets add more about

> the dura mater. I would have but I wanted to get it to the mailbox today.

> Debbie would you please send something through that we all can include in

> our letters that have all the points about dura mater?

>

> Thanks

>

> Robin >>

>

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

>