Your Actions Matter

How much political weight do you carry?
You have significant potential to cause change!

As public advocates you have the privilege of being able to educate and inform our leaders with
a voice of experience and understanding. Public officials need to hear your concerns to know
which issues are important. By speaking out, you are educating our leaders and giving a voice
to those who cannot speak for themselves.

 Know which Legislator‘s office you are visiting including building, room number and time.
(provided in your folder)
 Know which committees your Legislator is on (provided in your folder)
 Know the name of the staff person you are going to visit (provided in your folder)
 Meet with other family members from your district who are going to the same office
 Decide who will be the lead person – be organized!
 Be able to explain what CJD is, be prepared to answer questions
 Be familiar with the Congressional requests
 Remember you probably only have 15 minutes
 Dress is business casual (please no flip flops, shorts, short skirts, t-shirts or tube tops)

 Give the Legislator/Aide the information folder provided by the CJD Foundation
 Stay on topic, use notes if necessary
 Thank them for the work that Congress has already done on behalf of prion diseases
(research and surveillance funding)
 Be prepared to tell your story of loss to CJD in a short time frame, 3 - 4 minutes at most
 Keep opinions out – stick to the facts
 Treat your Legislator/Aide respectfully
 Thank them for taking the time to meet with you
 Remain non-partisan
 Get a business card from each representative you visit, so you can follow-up and write a
thank you email

 Write a thank you email to each person you met with - VERY IMPORTANT
 Offer to be available to answer questions they may have
 Send any additional information promised during the meeting
 Complete the report form for CJDF’s records and return to CJDF