-----Original Message-----
From: Terry Singeltary <flounder9@verizon.net>
To: randy.weber@mail.house.gov <randy.weber@mail.house.gov>
Cc: help@cjdfoundation.org <help@cjdfoundation.org>; Debbie@CJDFoundation.org <Debbie@CJDFoundation.org>; leslie@cjdfoundation.org <leslie@cjdfoundation.org>; bsa35@case.edu <bsa35@case.edu>
Sent: Sat, Aug 29, 2020 12:37 pm
Subject: NPDPSC Transmissible Spongiform Encephalopathy TSE Prion Surveillance Funding?

NPDPSC Transmissible Spongiform Encephalopathy TSE Prion Surveillance Funding?

Greetings Honorable Senator Weber,

My Mother died from the hvCJD TSE Prion confirmed back on December 14, 1997.

On behalf of all families affected by Prion Disease, and in the interest of public health, I urge you to ask the Senate Appropriations Committee to support a $1 million increase in the appropriation for Prion Disease surveillance through the CDC.

As you may know, Creutzfeldt-Jakob Disease (CJD) is a Prion Disease that is rapidly progressive, invariably fatal, and in some cases can be transmitted through food or medical procedures. Prion Disease surveillance is imperative, particularly as scientists evaluate whether Chronic Wasting Disease (CWD) could transmit to humans through food or the environment. CWD, an environmentally transmitted Prion Disease of deer and elk, has rapidly spread to 26 states. The attached document provides more detail;


''Why is USDA "only" testing 25,000 samples a year?


Sheep Scrapie, Bovine BSE, Cervid CWD, ZOONOSIS, TSE Prion Roundup August 18, 2020



National List of Reportable Animal Diseases (NLRAD) proposed rule CWD, Scrapie, BSE, TSE, Prion Disease Singeltary Submission Docket APHIS-2017-0002


SUNDAY, MAY 26, 2019

Arguments for Alzheimerís and Parkinsonís diseases caused by prions Stanley B. Prusiner

''From a large array of bioassays, we conclude that AD, PD, MSA, and the frontotemporal dementias, including PSP and CBD, are all prion diseases''


Prion Disease surveillance funding to the CDC and the National Prion Disease Pathology Surveillance Center (NPDPSC) has remained static at $6 million per year for more than five years, despite increasing costs. Surveillance expenses have continued to rise due to the increasing number of cases, the increase in autopsy costs, and the need to screen for COVID19 and take extra precautions necessary for COVID19. Without an increase in funding commensurate with these expenses, Prion Disease surveillance will be compromised.

Fortunately the House has recommended an increase of $1,000,000 in its bill. We urge you the Senate committee to do the same. The report language is as follows:

FY2021 Labor/HHS/Education Appropriations Act Department of Health & Human Services Centers for Disease Control and Prevention Emerging and Zoonotic Infectious Diseases

Prion. ó The Committee includes an increase of $1,000,000 to advance efforts on prion diseases, which occur in both humans and animals, primarily affecting the central nervous system. This group of degenerative neurological disorders is currently incurable and invariably fatal. CDC supports the only Federally provided resources to monitor human prion diseases in the U.S. The Committee supports these efforts and recognizes the critical work of the National Prion Disease Pathology Surveillance Center. The workload related to chronic wasting disease (CWD) in deer and elk populations in the U.S. is in addition to the Centerís ongoing efforts related to human prion diseases that includes research, surveillance, tissue banking, and technical and supportive assistance to providers to families. Accordingly, the Committee provides increased funds to support this work.

Please feel free to contact me at (xxxxxxxxxx) if you have questions. Thank you for your assistance in requesting this vital funding to protect public health and ensure Prion surveillance continues.

Best wishes, Sincerely,

Terry S. Singeltary Sr.
Bacliff, Texas USA 77518