Addressing Public Policy and Advocacy is an important part of the mission of the Creutzfeldt-Jakob Disease Foundation. We believe it is important to meet with our representatives to elevate awareness and education and to promote funding for research and surveillance.

At each of the past three CJD Family Conferences, family members were trained to make congressional visits. Below are the "Asks" and the results of those "Asks". A family member visiting Capitol Hill also brings a face to this disease. Following is a summary of these visits:

2003

Will the member support restoration of the DoD National PrionDisease Research Program?
Will be reviewed in 2004 per previous scheduling
Will the member support $4 million in funding to the NationalPrion Disease Pathology Surveillance Center?
Full funding was approved and provided to increase surveillance of CJD
Will the member support restoring a CJD/Prion disease lab at theNIH or NINDS?
Restoration of NIH Lab was denied

2004

Will the member support the request to an increase of $800,000 to the CDC for prion disease surveillance in Fiscal Year 05?
Funding was increased by $1,000,000--$200,000 more than requested
Will the member support the creation of a DHHS taskforce?
Formation of the DHHS Taskforce was approved and was implemented as an IWG (Interagency Working Group) in January 2005

2005

Will the member support the request to an increase of $1 million to the CDC for prion disease surveillance in Fiscal Year 06?

Will the member support the request that the federal Interagency Task Force provide oversight of surveillance and prevention activities surrounding BSE as well and that a full report of its work and progress be made public?

Will the member support the request that Congress investigate the USDA's present system of BSE surveillance requesting immediate implementation of a mandatory animal identification system and BSE testing for all animals over the age of 20 months?

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