Oprah letter

[Guest guest]

Here is the Oprah Letter.

October 23,1998

Ms. Oprah Winfrey

P.O. BOX 909715

Chicago, IL 60690

Dear Oprah,

I am Robin Hawkins and I wrote to you earlier this year, right after my

mother passed away from Cruetzfeldt-Jakob Disease. I am not writing to

give my views on the trial or to talk about beef but to ask a couple of

questions and to give a show idea.

My sister and I purchased computers this year to correspond with

others who lost a love-one to CJD. We found a wonderful internet site that

was formed by three individuals who lost two spouses and a father to this

disease. It is called CJD Voice and the website address is:

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

Since then there have been three more sites spun off from this one, they

are: The Many 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/Withdrawl-CJD:http://members.aol.com/debbieoney/blood.htm.

" Faces " was launched to show caretakers, doctors and scientists the

symptoms CJD. It tells the stories to the world. My Mothers story is

titled Donna Jean Burgette. CJDWatch was started to show actually where

the CJD deaths were and also to show the clusters that there are in many

states. It is a very powerful site and is constantly changing due to new

deaths fromCJD happening all the time. BloodCJD was started for people who

have received blood recall/withdrawals notifications because the blood

products they or their children received came from 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.

We have been working hard to find people who have been affected by CJD, so

we can keep adding those dots to the states. As you probably know the

Center for Disease Control claims this is only 1 in a Million. We believe

that the incidence is much higher than that. If we can show this then more

research money will go for CJD and also get it to become a mandatorily

reportable disease. In most states in the U.S. it is not. CJD is also

misdiagnosed many times. There was a study done with alzheimers patients,

after an autopsy was performed it was shown that 13% of the people who had

been diagnosed with alzheimers actually had CJD.

One thing I would like to know is, due to you having to go to trial for the

beef comment, how many people had written to you to say they had been

affected by CJD? It would be very helpful if you could give us this

information. Since we know there are people out there we would like to

touch them. I was wondering if you could do a show on how the internet has

helped people. It is known a lot for how easy it is to get to the

pornography but could you tell another side of it and at the same time also

help us find more people affected by CJD?

CJD Voice is an e-mail and support group. It is a godsend to so many

people who have felt alone. We have had people sign on that lost someone

to CJD 5 or 10 years prior and finally feel comforted because they have

gotten to talk to people who went through the same thing they did. We have

others who find us who are going through CJD right now in their family.

They ask us questions because their doctors don't know the answers. On

August 26th Public Eye did a show on Cruetzfeldt-Jakob disease and it also

mentioned our web site. Two minutes after the show aired our chatroom was

packed with people who had been affected by this disease. With a show at a

different time and a whole different group of people that watch we could

reach more people and give support and also get information for our sites.

The other thing I wanted to ask of you is, what do you do with your old

computers that you replace. Have you considered donating them? We have

people who don't have access to a computer and would like one, and also we

have others that have old ones with low power and RAM. We would appreciate

it if you would consider us next time.

I hope to hear from you.

Sincerely Yours,

Robin L. Hawkins