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How to Contact Your Congressperson

To find the contact information for your congressperson go to

Below is a sample letter to use as a guide when you contact your Representative and Senator. Please use it as a guide only and include your experience with CJD, your feelings and what you know.

After the Sample letter is a list of 5 goals we would like to see accomplished.

Below that is a statement of the platform developed by many non-government organizations for Mad Cow Prevention. You might include one or both of these in your letter.


Dear Congressman __________,
I am a [your state and district] resident. I lost my [husband, wife, mother...], [name], age [age], to CJD on [date]. I began learning everything I could about prion diseases as soon as [name of family member] was diagnosed at [name of doctor or hospital] in [date of diagnosis]. These emerging diseases are still mysterious and the conclusion I came to is that the U.S. needs to be proactive and farsighted in the precautions it takes, while the science of prions is still so immature.
I belong to a grassroots network of over 400 families, CJD Voice, which supports families who are suffering or have suffered this tragedy. Our group has been lobbying for stronger Government legislation to ensure that Congress and the Federal regulatory and public health agencies adequately safeguard against future CJD deaths. We have been focused on the side that we unfortunately know well - the lack of an adequate public health system for CJD and other brain-wasting diseases:
* the lack of consistent mandatory reporting of human brain-wasting disease,
* the widespread ignorance on the part of hospitals and neurologists which means that CJD victims are not diagnosed for months,
* the lack of trace-back for surgical instruments used on patients who later develop CJD,
* the paucity of funding for prion research in the U.S. compared to in Europe, and
* the loopholes in rules for blood donors that allow individuals who had neurosurgery prior to the 1980s, who are at greater risk for CJD, to donate blood I care so much about preventing even one additional death from CJD, that I am out talking in public about the most terrible thing you can imagine. Take Alzheimer's, Parkinson Disease, and MS and roll them into one disease, but have the disease course be 5 months instead of 10 years. CJD robs its victims of everything that makes us human in a few short months. At the end of [name]'s life, [she or he] could not speak, swallow, eat, move a single part of his body voluntarily, or show emotion. [His or her] beautiful smile, indeed all emotions, were absent. [He or She] stopped recognizing the family [he or she] was so devoted to. All that was left was a frail shell of our beloved [husband, wife, mother] lacking any connection but the most primitive with other human beings. I don't want anyone to go through the hell our family has been through unnecessarily. It is the worst death imaginable.
[Your name]


Goals of CJD Voice

1. Prevent future cases of CJD
Require a tracking system for neurosurgical instruments to be able to look back and trace an individual instrument set in case of later diagnosis of CJD.
Tighten up FDA regulations on blood donors to include additional groups at risk for CJD, such as those who had neurosurgery in the 1970s and early 1980s when dura mater grafts were used and when sterilization of neurosurgical instruments was less stringent.

2. Diagnose CJD more quickly and reliably
Establish and fund programs to educate neurologists and medical students so that they recognize possible CJD. (A traveling program with videos may be helpful.)

3. 100% reporting of possible CJD with 24 hours of diagnosis
Require mandatory reporting of diagnosis of possible CJD with funding for testing, monitoring, and autopsy. The same reporting must be instituted in all 50 states and the District of Columbia.
(Note: Need some sort of teeth if possible. Dr. Gambetti has been writing to neurologists for years now with sparse results.)
In addition, require that neurologists have their patients fill out a questionnaire of lifestyles [food, surgery, dental procedures, etc. along the lines of the U.K. questionnaire].

4. 100% autopsy of possible CJD
Fund the National Prion Surveillance Center at Case Western to autopsy all possible cases of CJD.

5. Increased funding for research of TSE
To include increased funding for the NIH Rocky Mountain Laboratory, Hamilton, Montana.


CJD Voice Center for Food Safety Center for Media & Democracy
Consumer Federation of America Consumers Union
The Creutzfeldt-Jakob Disease Foundation Farm Sanctuary
Friends of the Earth Global Resource Action Center for the Environment Government Accountability Project The Humane Society of the United States
Institute for Agriculture and Trade Policy Organic Consumers Association Public Citizen

Mad Cow Disease Prevention Platform

The above-mentioned groups call on public officials, food processing companies, the agriculture industry, and medical and veterinary professionals to adopt the following measures to ensure that mad cow-like diseases pose no threat to our health, to our economy and to the welfare of animals:

1) Test all cattle over 20 months of age for mad cow disease

2) Stop the feeding of blood, slaughterhouse waste, manure, road kill and other mammalian byproducts to food animals

3) Keep all "downer" animals, not just cattle, out of the food and feed supply and require their humane euthanasia

4) Require identification and tracking of animals

5) Implement country of origin labeling of meat

6) Give the USDA the authority to recall contaminated meat and disclose the names of companies that handle recalled items

7) Require reporting and investigation of all cases of brain-wasting disease in people to see if they are caused by mad cow, mad deer or other similar animal diseases.

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