IMPORTANT: RECAP OF PETITIONS DETAILS

[Guest guest]

Hello Everyone:

This is very important for everyone to read and take action on. This is

concerning the two Petitions filed ... one to the FDA and one to the CDC and

is to recap, once again, what you need to do:

In the pair of Petitions, the Center for Food Safety, the Humane Farming

Association and families of CJD victims, among others, have demanded the FDA

extend existing protections to bar the use of blood, blood products, gelatin

and pig byproducts in animal feed.

They also petitioned the CDC to, in essence, make CJD a reportable disease in

every state in the US.

These issues are most important to us in our fight against CJD.

The Petition filed with the FDA is docket 7774. The name of the Petition is

the Humane Farming Association v. Jane Henney.

The CDC petition is docket 99P-0033/CP1. This Petition is Humane Farming

Association v. Donna Shalala and Gene s.

Please use these docket numbers when writing to the agencies. Those who

have/had a family member with CJD and would like to sign on the Petitions may

do so just by writing to the agencies. Please do not use " fill-in-the-blank "

forms for families who have lost someone to CJD and wish to sign the Petitions

.... but are not on-line.

Families who are losing or have lost someone to CJD should write their

personal stories with emotion and feeling. The story should support the

allegations in the Petitions. Signatures on a petition do not mean as much as

stories do. If you have children who are losing or have lost their parent to

CJD, and would understand your interest, perhaps they could put their feelings

in writing. We strongly need stories that will GRAB the readers' attention

and also their hearts. If there is one person at the FDA or CDC who would be

reading all these letters...we need to make our issues take priority notice

with them. We need stories to tear their hearts out and make them cry. Just

imagine if we could write a story painting a picture of the many frustrating

times our loved one endured so many tests only to have no diagnosis made.

Remember how difficult it was to finally get a CJD diagnosis? We need to also

tell how uneducated medical personnel are in CJD.

If you have a family member who was undiagnosed at death but the autopsy

showed the person had CJD, that information can and should be added. You can

write a personal letter supporting the Petitions and say " the Petition states

that CJD is often misdiagnosed. In my case, our experience was that we

received no diagnosis at all. This experience stresses how important it is

that CJD become a reportable disease so that practitioners and clinicians

become familiar with the diseases and can diagnose it " . Or you may use other

words to that effect.

More than one family member can write letters of support. For example if a

spouse died of CJD, the siblings could write from their point of view,

concerning

the issues, and send their letter with the spouse's.

Anyone can write the agencies and support the Petitions. This is a very

important issue and letters should outline the writer's experience with CJD.

The writer needs to be familiar with the Petitions and there is an executive

summary at this site: http://www.mad-cow.org. which explains what we are

asking the agency to do. The writer should try to merge what they know about

CJD and what the petition asks for. For example: " At first, CJD was not

diagnosed; just like it said in the petition ... we experienced the

frustration of misdiagnosis " .

And don't forget ... write your Congressman and Senator and send them copies

of the Petitions. Ask them to write letters supporting the Petitions to the

FDA and CDC.

And we need to write our " thank-you " to the following people:

Hansen: hansmi@...

Stauber: stauber@...

Attorneys at the " Center for Food Safety "

Joe Mendelson: joemend@...

D'Arcy Kemnitz: darcy@...

Kimbrell kimbrell@...

For those of you who might have questions, please email or call D'Arcy

Kemnitz. I have talked with her myself and she is very nice and quite

knowledgeable. She is also wanting to help us in our cause against CJD. Her

address is:

D'Arcy Kemnitz

Staff Attorney

International Center for Technology Assessment

310 D Street, NorthEast

Washington, D.C. 20002

telephone

facsimile

Here is an example of the letter to the FDA:

Dockets Management Branch

Food and Drug Administration

Room 1-23

12420 Parklawn Drive

Rockville, MD 20857

Docket Number 7774

Dear Sir/Madam:

I would like to be added as a petitioner to the petition of the Humane

Farming Association v Jane Henney, FDA Docket Number 7774. I reside at

46-03 216th Street, Bayside, New York 11361. My husband, P.

Ewanitz, Jr., a engineer and plant facilities manager, died of

Creutzfeldt- Disease (CJD) at Perlow Hospice, 1st Avenue and

16th Street, New York City on April 9, 1997 after his initial diagnosis

was mild stroke.

Thank you,

Ewanitz

Your letters concerning the CDC Petition should be sent to:

Donna Shalala, Secretary of Health and Human Services, 200 Independence Ave,

SW; Washington, D.C. The petition is Humane Farming Association v Donna

Shalala and Gene s.

If you have any questions, please write either Pat (ape826@...); Liz

(LArmstr853@...); Bev (BevAlso@...) or myself (dbc06@...).

We are always here to help you.

May God bless and support us in these efforts. Please...do this for our

loved ones we have already lost to the demon called CJD... for those we are

losing now.. and for those CJD cases yet to come.

Thoughtfully,

Dolly