How to Contact Your
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
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
* 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
* 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
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.
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
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
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,
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
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
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.