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People often want to donate money to organizations that do CJD research which will hopefully lead to treatments and a cure and to organizations which provide services to CJD victims.

The following is a list and brief description of organizations that have provided information on how donated money would be used  The information was collected to be used as a reference for research and service organization donations.  CJD Voice does not solicit donations of any type for any facility. Neither CJD Voice, nor its members, take responsibility for the legitimacy of these facilities, their practices, or the information they provided. Neither CJD Voice nor its members are liable for any use made of this information.


United States

08/14/11 Dr. Bastian seeks support after loosing research equipment in Hurricane Katrina. Dr. Bastian now continues his work at Tulane and at LSU in Baton Rouge, and his research has reached an exciting stage. He has previously shown that a wall-less bacterium, spiroplasma, in consistently associated with TSE's.

Excerpt from Dr. Bastian: "I am planning an experiment to show that spiroplasma infection triggers prion formation in CJD which is the last part of the puzzle. We have to get the World going in the right direction. In order to do this I need to purchase a sonicater system costing $ 7,500.00 to be installed at Tulane Medical School in New Orleans.
Government funding is impossible so I am inquiring regarding the possibility of obtaining donations to this end."

Donations can be sent to:

Fund for CJD Research
Frank O. Bastian, MD (administrator)
Attention: Brandon D. Sita, Vice President
JPMorgan Chase Bank
2200 St. Charles Ave
New Orleans, LA 70130

Frank O. Bastian, MD
Professor of Veterinary Science
LSU Agriculture Center


Case-Western Reserve University
National Prion Disease Pathology Surveillance Center located at Case Western Reserve University

Contact: Dr. Pierluigi Gambetti
             CJD Surveillance Center
             2085 Adelbert Road
             Cleveland, OH 44106

Donations can be made to Dr. Gambetti for surveillance purposes or for research. Research donations can also be made to the following investigators in the Department of Pathology:

Dr. Shu G. Chen

Dr. Robert B. Petersen

Dr. Neena Singh

Dr. Man-sun Sy

Cornell University
Ithaca, NY 14853
Contact: Dr. Kelvin Lee, Assistant Professor
             Chemical Engineering
             120 Olin Hall
             Cornell University
             Ithaca NY 14853-5201
             tele:   (607) 255-4215
             fax:    (607) 255-9166

Any donations would be used to enhance and improve our ability to conduct research in the following areas: premortem diagnosis of dementia (e.g. CJD) via molecular barcoding of cerebrospinal fluid proteins or the metabolic engineering of cells capable of improved production of pharmaceuticals. Donations can be designated for either project or both.

Creutzfeldt-Jakob Disease Foundation, Inc.
P.O. Box 5312
Akron, Ohio  44334
CJD Foundation
Contact Helpline 1-800-659-1991

Donations are used to fund costs related to correspondence, publishing, and communication. Our focus now is to raise funds for a conference/symposium of a wide variety of experts (i.e. government, scientific, medical and CJD family members) with different viewpoints on CJD. We would like to fund other projects like a fund for transportation and performances of much needed autopsies, but we do not have sufficient resources at the present time to finance them.

National Foundation for Infectious Diseases
4733 Bethesda Avenue, Suite 750
Bethesda, MD 20814
(301) 656-0003
Contact: Len Novick, Executive Director

NFID conducts public awareness activities about infectious diseases.
Donations for CJD would be used to defray expenses associated with bringing speakers to NFID press events to discuss CJD As an example see this page at web site:

Scripps Research Institute
Dr. Michael Oldstone's Laboratory
Dept of Neuropharmacology
Mailcode IMM6,
10550 North Torrey Pines Road
La Jolla, CA 92037
Contact: Gay Schilling at 619 784 8054

Donated funds will be used to study, using mouse models, how to treat CJD.

Sperling Foundation
3295 Kincaid St
Eugene, Or 97405
Contact: Dr. Thomas Pringle
               E-mail best initially  
               Voice or fax: 541-484-0669
Official Mad Cow Homepage

Donations would be used for basic research into CJD. Our main interest is in administration of sequencing the prion gene in various species by selected researchers worldwide. We can sequence 1-5 genes with a donation of $500-$2500 when there is cost-sharing at the laboratory institution. We hope to get at normal function of the prion gene by this approach; there would major benefits from this to diagnosis and therapy development. Our Web site is currently maintained through income from endowment but donations are needed and welcomed here as well.

The University of Chicago
Howard Hughes Medical Institute
Dept of Molecular Genetics & Cell Biology
Box MC1028
5841 S. Maryland
Chicago, Ill 60637
Contact: Susan Lindquist
              Phone 773-702-8049
              Fax 773-702-7254

Donated funds would be used to develop a rapid assay for as a first screen for potential therapeutic agents. We will take advantage of the fact that the mammalian prion protein appears to be converted to the conformation characteristic of the disease when incubated with yeast proteins.

The University of Chicago Medical Center Department of Neurology
Contact: Raymond P. Roos, M.D.
              Professor and Chairman
              Dept. of Neurology/MC2030
             University of Chicago Medical Center
             5841 South Maryland Ave.
             Chicago, IL 60637
             Phone number 773-702-6390
             Fax number 773-702-7775
Support of research activities.

Washington University School of Medicine
Department of Cell Biology and Physiology    
660 South Euclid Avenue
St. Louis, MO 63110
Contact: Dr. David A. Harris
              Tel: 314-362-4690
              Fax: 314-362-7463

Laboratory research on the biology and therapy of CJD.

Yale Medical School
Section of Neuropathology, Dept. Surgery
310 Cedar St., New Haven, CT. 06510
Contact: Laura Manuelidis, M.D.
              Professor and Head of Neuropathology
              203-785-4442 (note Yale is changing 3 digits of code (for 785) soon.

To support research on CJD infections, with animal, cellular and molecular studies to clarify useful diagnostic, preventive and therapeutic approaches and to understand fundamental properties of the infectious agent and neurodegenerative processes in aging.


Outside the United States

CJD Support Network,
Birchwood, Heath Top, Ashley Heath,
Market Drayton, Shropshire, TF9 4QR
Contact: Gillian Turner, National CJD Co-ordinator
              Telephone 01630673993

Donations used for "Caring Grant" Scheme. Families affected by CJD in financial need can apply for a "Caring Grant" of up to £300 to help with caring costs.

The Institute for Animal Health
Compton, Newbury, Berkshire RG20 7NN
Contact: Dr B M Freeman, telephone 01635 578411
The Institute pursues research "to understand the processes of infectious diseases and from that knowledge develop methods for their control". A significant proportion of the Institute's funding and resources is currently devoted to transmissible spongiform encephalopathies (tse's) research. Donor determines how donation to be used. Possibilities are funding a prize for major contributions towards an understanding of TSEs, sponsorship of a named fellowship to undertake research into the TSEs, and a general contribution towards sustaining the TSE research programme.

Institut für Biochemie
Laboratorium für Molekulare Biologie
Feodor-Lynen-Str. 25
D-81377 Munich
Fax: 49-89-74017-448
Contact: Dr. Stefan Weiss, Group Leader Prion Research
              Tel.: -49-89-74017-410

Donations would be used for research regarding therapeutics for the treatment of CJD and other scrapie related diseases. Research which enlightens the role of prions in the life cycle of prions and the search of therapeutics which could block important steps within that cycle.

Istituto di Ricerche Farmacologiche "Mario Negri"
20157 Milano, Italy
Contact: Gianluigi Forloni or Mario Salmona
              Tel. +39 2 39014462 Fax +39 2 3546277

Donations will be used for studies to investigate, using in vitro and in vivo models, the molecular basis and the pathogenesis of CJD and the other prion-related encephalopathies (PRE), and to develop potential therapeutic approaches.

Spongiform Encephalopathy Research Campaign (SERC)
Pendlehurst St
Burnley, UK
BB11 4RL
Contact: Dr. Steve Dealler
              01282 701501 (home)
              01282 474292 (work)

Donated funds would be used for research and for the spreading of information concerning spongiform encephalopathies

Unidade de Neuropatologia

Hospital de Santo António
4050 Porto
Contact: Prof Manuel Melo Pires
              Tel: 351-2-6002169

University hospital that provides CJD diagnosic service for most of the northern and central parts of Portugal.. Since BSE is affecting cattle there they have to be alert for the appearance of cases of new variant.
Donated funds would be used to purchase modern safety lab equipment that is needed to handle CJD material and to provide more CJD information to health professionals.

University of Melbourne

Department of Pathology
Parkville Victoria 3052
Contact: Colin L Masters, Professor and Head, Department of Pathology
              Ph: 03 9344 5868
              Fax: 03 9344 4004

Donated funds will be used for epidemiological studies of CJD in Australia and New Zealand, for laboratory study of the conformation of PrP proteins which cause CJD and research into CJD treatments.

University of Melbourne
Parkville, Vic., 3052
Contact: Dr. Lynette J. Dumble, Senior Research Fellow, History and Philosophy of Science
              Tel:: 61-3-9853-2874

Donated Funds will be used for epidemiological investigations of confirmed cases of CJD, documenting the history of infertility and gynecological surgery in women, and the history of cardiac, urologic, reconstructive, vascular and neurosurgery surgery, dura mater implants, blood transfusion, and dietary and performance-enhancing hormones in men and women.

University of Toronto,
Centre for Research in Neurodegenerative Diseases,
Tanz Neurosciences Building,
6 Queen's Pk. Cr. W.,
Toronto, Ontario, Canada, M5S 3H2
Contact: Lyn Michisor (CRND Financial Officer) 416-978-1872

Donated funds used in Dr. Bergeron's laboratory will be used to do CJD research and diagnosis. It will be used for the characterization of prion strains in human CJD brains.

Donated funds used in Dr. Cashman's laboratory to develop a sensitive diagnostic test for the prion agent in blood, and to identify the "receptor" of the prion protein, which may provide new treatments for CJD and related disorders.

Donated funds used in Dr. Westaway's laboratory will be used to establish animal models of CJD and thereby provide a rational approach to defining risk-factors and candidate therapeutics.

Checks should be made payable to "University of Toronto, CRND, CJD Research". Specify in which laboratory you want money to be used.

University of Vienna
Institute of Neurology, AKH 4J, POB48
A-1097 Vienna, Austria
Contact:: Herbert Budka, M.D., Professor and Head of Neuropathology
               Phone +43-1-40400-5504 or -5573
               FAX +43-1-40400-5511 or -5573

Donated funds will be used to continue and expand diagnostic neuropathological confirmation or exclusion of suspect cases of CJD at autopsy (currently provide free diagnostic neuropathology consultation service for many laboratories in Europe and the world) and for research into the development of CJD at the cell and tissue level, integrating modern neuropathological with molecular and biochemical techniques. This should increase the understanding of CJD pathogenesis as a prerequisite for therapeutic approaches.

World Health Organization
Division of Emerging and other Communicable
Diseases Surveillance and Control
World Health Organization
Avenue Appia
Geneva 27
Contact: Dr Martin Zeidler
              Tel 00 41 22 791 4025
              Fax 00 41 22 791 4893

WHO activities relating to CJD include promoting global CJD surveillance through regional and national workshops, establishing regional collaborating centres to provide expertise to developing countries on diagnosis of CJD and the holding of meetings to discuss issues related to human and animal TSEs. Donated funds would be used for these types of activities. It is possible to direct money to a particular project.

If you know of any other organizations engaged in CJD research or service which you feel should be included in this list please contact M. Cheri Bordelon at


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