Advocacy

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.

Despite budget reductions over the years, funding for this CDC program has remained steady or has increased each year in recent years, thanks in part to the advocacy work of the families of the CJD Foundation.  As a result, brain autopsies continue to be performed at no cost to families.  In addition to providing vital information to families, autopsies ensure that brain tissue is available through the NPDPSC to support research.

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How you can help
If you’re not able to visit Washington on Advocacy Day, you can:

  • Write letters to your legislators. 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)

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

To learn more about Congressional Requests, click here.