DONATION & RESEARCH LIST
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
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
216-368-0587
216-368-4090-fax
cjdsurv@po.cwru.edu
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
216-368-8925
scx59@po.cwru.edu
Dr. Robert B. Petersen
216-368-6709
rbp@po.cwru.edu
Dr. Neena Singh
216-368-2617
nxs2@po.cwru.edu
Dr. Man-sun Sy
216-368-1268
mxs92@po.cwru.edu
Cornell University
Ithaca, NY 14853
Contact: Dr. Kelvin Lee, Assistant Professor
Chemical Engineering
120 Olin Hall
Cornell University
Ithaca NY 14853-5201
e-mail:
khlee@cheme.cornell.edu
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:
http://www.medscape.com/Affiliates/NFID/pressconfs/duma96/agenda.html
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
tom@cyber-dyne.com
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
E-mail:
S-Lindquist@uchicago.edu
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
E-mail:
rroos@drugs.bsd.uchicago.edu
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
E-mail:
dharris@cellbio.wustl.edu
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
E-mail:
laura.manuelidis@yale.edu
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
E-mail:
gillturner@cjdnet.fsnet.co.uk
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
Genzentrum
Feodor-Lynen-Str. 25
D-81377 Munich
Fax: 49-89-74017-448
Internet: http://www.lmb.uni-muenchen.de
Contact: Dr. Stefan Weiss, Group Leader Prion Research
E-mail:
weiss@lmb.uni-muenchen.de
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
E-mail:
forloni@irfmn.mnegri.it
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)
Wyndhurst,
Pendlehurst St
Burnley, UK
BB11 4RL
Contact: Dr. Steve Dealler
01282 701501 (home)
01282 474292 (work)
E-mail:
deal@airtime.co.uk
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
Portugal
Contact: Prof Manuel Melo Pires
Tel: 351-2-6002169
E-mail:
honavar@mail.telepac.pt
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
Australia
Contact: Colin L Masters, Professor and Head, Department of Pathology
Ph: 03 9344 5868
Fax: 03 9344 4004
E-mail:
pathology@pathology.unimelb.edu.au
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
Australia
Contact: Dr. Lynette J. Dumble, Senior Research Fellow, History and
Philosophy of Science
Tel:: 61-3-9853-2874
E-mail:
ljdumble@connexus.net.au
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
E-mail: h.budka@akh-wien.ac.at
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
CH-1211
Geneva 27
Switzerland
Contact: Dr Martin Zeidler
E-mail:
zeidlerm@who.ch
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 Cheri at freeMilliefleur@yahoo.com
