Several times each year, the CJD Foundation visits Capitol Hill with the Director and co-Director of the NPDPSC to ensure legislators remain cognizant of the impact of CJD in their districts, and what they can do to support surveillance and ultimately research.

The most important visit occurs on CJD Advocacy Day each July, when families who are in Washington, D.C., for the CJD Foundation’s Annual Family Conference visit Capitol Hill.  The CJD Foundation arranges appointments for family members with their senators and representatives so they can share how prion disease has impacted their family.  Through these meetings, families educate their representatives about CJD and urge them to continue funding the CDC program that supports CJD surveillance.  Before the meetings, the CJD Foundation provides an orientation and materials to support families in these discussions.


The CJD Foundation is currently advocating for the Senate to increase funding of Prion Disease Surveillance (subcommittee: LHHS, agency: Centers for Disease Control and Prevention (CDC), account: Emerging and Zoonotic Infectious Diseases). This funding is critical to monitor cases of Creutzfeldt-Jakob Disease (CJD), an invariably fatal neurodegenerative disease. In addition, we need the Senate's support to encourage the NIH to designate Prion Disease as one of the “Alzheimer’s Disease Related Dementias (ADRDs).”

We are very grateful for the support of the House of Representatives in increasing Prion Disease Surveillance’s appropriation by $1 million for a total of $7.5 million. We hope the Senate will support this long-overdue and much-needed increase.

How you can help

Write to your Senator to increase funding of Prion Disease Surveillance using this customizable letter by August 30, 2022.

  1. Click here to find your senators.
  2. Call their office. Ask for the name and email address of the staff member who handles Health and Human Services Appropriations.
  3. Call and/or email the staffer A.S.A.P. Use our letter template to compose your email. Include your address and share your family's story with prion disease.
  4. Send us a copy of your message. (Optional)

Thank your House Representative by sending them this customizable letter.

Click here to find your senators.


Write letters to your legislators. For a letter template, click here. For tips and ideas, click here.

Visit your senators and representatives in their home offices. For a checklist, click here.

Raise awareness about CJD and Advocacy Day through social media, by wearing a CJD awareness bracelet or Strides for CJD T-shirt on key dates, such as Rare Disease Day (Feb. 28), Advocacy Day (July), Strides for CJD Day (October), and International CJD Awareness Day (Nov. 12)

Learn about The CJD Foundation's Key Congressional Requests.


To learn more about Lauren's Capitol Hill journey, click here.

To learn more about Congressional Requests, click here.