Advocacy - CJD Foundation

We’re actively communicating with legislators.

You can help.

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

We hold our CJD Advocacy Day in March.

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.

Resolutions Supporting the Goals and Ideals of
Creutzfeldt-Jakob Disease (CJD) Awareness Day Introduced in House and Senate

December 5, 2025

On November 10, Representative David Valadao (R-CA-22) introduced a bipartisan resolution supporting the goals and ideals of Creutzfeldt-Jakob Disease Awareness Day in the House of Representatives. On November 12, Senator Jon Husted (R-OH) introduced a resolution supporting the goals and ideals of Creutzfeldt-Jakob Disease Awareness Day in the U.S. Senate. This marks the first time there have been CJD resolutions introduced in both the House and Senate.

Creutzfeldt-Jakob Disease (CJD), is a rare, 100% fatal, degenerative brain disease that causes rapidly progressive dementia. These resolutions are an important step to recognizing the importance of raising awareness of this rare brain disorder.

“These resolutions shine a light on the families who have lost loved ones to Creutzfeldt-Jakob Disease and those who continue to advocate for answers,” said Debbie Yobs, President and Executive Director of the CJD Foundation. “By raising national awareness, Congress is helping to strengthen the support for CJD patients, families, and researchers working to end this tragic disease. We are deeply grateful to Representative Valadao and Senator Husted and their Congressional colleagues for recognizing the urgency of this rare and devastating condition.”

Rep. Valadao was joined in this effort by Representatives Aaron Bean (FL-4), Shontel M. Brown (OH-11), Julia Brownley (CA-26), Vern Buchanan (FL-16), Jim Costa (CA-21), Vince Fong (CA-20), David P. Joyce (OH-14), Jerrold Nadler (NY-12), Eric Swalwell (CA-14), and Paul Tonko (NY-20).

You may find a link to the House resolution here and the Senate resolution here.

We’re advocating for additional funding for Prion Disease Surveillance and research.

This funding is critical to monitor cases of Creutzfeldt-Jakob Disease (CJD). 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).”

How you can help

Write to your Representatives and Senators to maintain funding for Prion Disease Surveillance through the CDC (which funds the National Prion Disease Pathology Surveillance Center and autopsy program) using this letter template by June 15, 2025. Click here to find your representative. Click here to find your senators.
Call their Washington, D.C. office. Ask for the name and email address of the staff member who handles Health and Human Services Appropriations.
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.
Visit your representatives and senators in their home offices.

Raise awareness about CJD and Advocacy Day through social media!

Wear a CJD awareness bracelet or Strides for CJD T-shirt on key dates, such as Rare Disease Day (Feb. 28), Advocacy Day (March), Strides for CJD Day (October), and International CJD Awareness Day (Nov. 12)