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- Supporting Families Affected by Prion Disease
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.
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.
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).”
Congressman Valadao Introduces Resolution to Raise Awareness on Rare Brain Disease: Congressman Valadao’s Press Release
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).”
Wear 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)
This website was made possible by a generous donation from Cookie Stivison, in memory of her husband Tom Stivison, and a grant from the Centers for Disease Control and Prevention.
