The charities that are involved with BSE and other spongiform encephalopathies

Because scrapie was never thought of as a large cost to the agricultural world, most of the money for research came from government sources. With the rise of BSE and the increase in CJD incidence, it was thought that more money would be derived from charity. The previous Government has made it plain (Mr. Mahwhinney, January 1995) that an increase in funding would give the impression that there was a risk to humans from BSE and as such they would not back such a plan. The current government has taken a different view in the UK.
 

This page has now been updated (from 2001) and improved to be put on the web site at: www.priondata.org

Spongiform Encephalopathy Research Campaign

This was started in 1994 following the television announcement of the problem with Victoria Rimmer. Its specific aims are to cause an increase in the money available for research into spongiform encephalopathy and to encourage such research to take place. Its budget is currently small but has sponsored a specific project concerning the feeding of beef products by doctors to their children. The campaign became a registered charity in 1995.

Chairman

Anne Maddocks,
The Small House,
Willow Grove
Chislehurst
Bromley
Kent BR7 5BS
0208 467 3328
(A retired medical microbiologist from St. Mary's Hospital, West London)

Secretary

Dr. Stephen Dealler
Microbiology Department
Burnley General Hospital
Burnley BB10 2PQ
01282 474292
(A consultant in Medical Microbiology) deal@airtime.co.uk

Other members of the trust board

Professor Roy Postlethwaite
6 Rencomb Drive
Cirencester
Gloucestershire GL 1YN
(A retired professor in Medical Microbiology)

Martin Schweiger
12 Montague Place
Leeds 8
0113 293 1604
Work 0113 295 2040
(A consultant in Public Health)

Maureen Treadwell
Meadow View
Chilbolton
Stockbridge
Hants
SO20 6AZ
e-mail 106036.354@compuserve.com (Involved in fund raising)

 Adrian Holme
38 McCall House
Tufnell Park Road
Holloway
London
N7 0PH
UK
adrian@aholme.demon.co.uk
tel/fax +44 (0)171 609 4049
(Advertising, organising)

The Creutzfeldt-Jakob Disease Support Network

Contact through Gill Turner (National CJD Coordinator) on 01630 673993, the aim is to provide help to all cases of CJD and relatives of cases (i.e. not just nvCJD).

The network was organised originally by Sandra Galloway (established 1995) following the death of her mother. She realised the difficulty that the people involved with such a disease had and was determined that such problems would not continue. Sandra (address below) is no longer on the committee.

The organisation is effectively a registered charity because it acts under the umbrella of the Alzheimers disease society and is funded now mainly by the Department of Health with a 3 year grant.

For information concerning meetings organised by this group.

It has specific plans relating to all forms of CJD:

National CJD Co-ordinator:
Gill Turner
Birchwood
Heath Top
Ashley Health
Market Drayton
Salop TF9 4QR
Tel: 01630 673993
106703.141@compuserve.com

Treasurer:
John Gilbert
1 Hill House
High St Stebbing
Nr Gt Dunmow
Essex CM6 3SQ
(Please send donations for the "caring grant" to John and these should be payable to the "Alzheimer's Disease Society - CJD Support Network".)

Sandra Galloway
98 Melton Mill Lane
High Melton
Doncaster
DN5 7TF
01709 588646
(the founder of the support network)

Ilja Andrews
147 Warwick Rd,
Banbury
Oxfordshire
OX16 7AR
01295 276339
Involved in increasing the public awareness. Speaks very well.

Also involved with this network are Helen Grant and, to some degree, Rob Will (see other address pages)

New Variant Families (this has now stopped: see Human BSE Foundation below)

It looks as if they now want to change the name of the organisation to 'Human BSE families'
i.e. this represents the group of familes that have had a case of nvCJD. As such it is largely contacted through Dot Churchill (01280 720033) or Lisa Harvey. Contact Frances Hall
99 Warkworth Dr.
Deneside View, Chester-Le-Street
Durham, UK
0191 3888960
e-mail fihall@orangenet.co.uk
fax 0191 388 8960

The Alzheimer's Disease Society

A specific group aimed at Alzheimer's disease. Because of the similarity of the two conditions the society also supports CJD work and has sponsored the production of a booklet for the CJDSN.

 The Alzheimer's Society has a lot of useful information on their full page on www.alzheimers.org.uk/cjd/intro.html

Gordon House
10 Greencoat Place
London SW1P 1PH
0207 306 0606

Eurosurveillance

Eurosurveillance
Hopital National de Saint Maurice
14 rue du Val d'Osne
94410
Saint Maurice
France

 This is a group that is making a specific surveillance of all the cases of CJD and BSE in the EC and is sending out a monthly sheet of information on the subject. 

20-20 Vision

A small political group charity that is interested in making sure that the politicians take rational viewpoints

 Gordon Glass
PO Box 1967
Bath BA2 9YD
01225 337400
Fax 01225 337800

Human BSE Foundation

99 Warkworth Drive
Chester-le-Street
Durham
DH2 3TW
Tel/Fax (National Helpline) 0191-389-4157

Chairman : Malcolm D Tibbert
Secretary : Frances Hall
Website address : www.hbsef.org
The Human BSE Foundation provides support and information to families affected by Human BSE (vCJD as it is also known). This is provided by our National Helpline, Carer's Guide, Website and befriending with only those who can truly understand the grief associated with losing a loved one to this terrible disease.

 The determined campaigning by our membership has been successful in the unique centrally funded care package secured for current victims.
 
 

This was formerly at:
Greenfields
Bath Road
DEVIZES
Wiltshire SN10 1QG

 Tel/Fax & Helpline 01380 720033
Email humanbsefn@aol.com.uk

Legal dissertations on CJD/BSE

You might be interested in getting in touch with people doing a legal dissertation on the subject of CJD and BSE:
Richard Greenhalgh Campbell Bates (R.G.C.Bates-bl3i8382@lmu.ac.uk) and another person, Emma Greytarex on 01703 677644, 67 Gordon Ave Portswood, Hants SO14 6WA, e-mail eag295@soton.ac.uk 

Creutzfeldt-Jakob Disease Foundation,Inc

This is an American foundation for the help of factors concerned with CJD. It was formed after the death in 1993 of someone with CJD and the poor understanding that was found by the medical people.

 Mayra R. Lichter
P.O. Box 611625,
Miami,Florida
33261-1625
United States
tel (305) 891-7579
e-mail crjakob@aol.com or mayracrl@aol.com

They now have an excellent web site: http://www.cjdfoundation.org/

Consumer Policy Institute in the USA

There is one person that seems to be very active in the subject of TSEs:
Dr. Michael Hansen
Hansmi@consumer.org
914-378-2452

 It appears that the USA consumer organisations are taking a tough line on this one and Michael Hansen knows enough about it to be able to argue the case.

Canadian CJD Society

Jacques Pelletier (president)
9507 Academy drive
S.E. Calgary
Alberta T2J-1A6
Canada
tel 403 252-3154
Fax- 403 252 3154
e-mail jacpel@home.com

CJD Voice (US support group)

Liz Armstrong
LArmstr853@aol.com

 Pat Ewantiz
APE826@aol.com

 Dolly Campbell
dbc006@aol.com

 This is a support group to families with CJD victims, started in the summer of 1997 with only 3 members and grown to over 50 members presently. It has members attend FDA Hearings regarding CJD, written to the CDC, congressmen etc..... It lobbies for increased funding for CJD research and are attempting to get CJD a reportable disease with the CDC. Anyone wishing to visit its homepage can do so at CJD Voice This is an internet e-mail discussion group which provides CJD education, advocacy for increased funding for CJD research, and emotional support for families with loved ones who are dying or have died of CJD. We have a webpage which includes a message board, chat room, links to other CJD-related websites and a list of organizations involved in CJD research and services to which people can donate money. The link for our webpage is CJ D Voice .
The address for our webpage is http://members.aol.com/larmstr853/cjdvoice/cjdvoice.htm
The link for our donation list of organizations involved in CJD research and services is Dona tions Page

The address for the page is http://members.aol.com/debbieoney/cjdvoice/donate.htm

If you have any questions or comments please e-mail me at DebbieOney@aol.com . also you can contact Dolly Cambell on DCB006@aol.com

Northern CJD group

LISA HARVEY
99 WARKWORTH DRIVE DENESIDE VIEW, CH-LE-ST. DURHAM
UK
tel 0191 3888960 or 0191 3885140
e-mail 106710.2614@compuserve.com
fax 0191 3888960

Friends of the Earth

One of the problems in the UK is that the disposal of the infected cattle has been poorly overseen and contamination of the environment may have taken place. Alan Watson is an FOE member and does not represent the views of the group. However, he does know a lot about the contamination issue. He has been denied information except at a price by MAFF

 Alan Watson
01792 851599 

Primary Immunodeficiency Association

David G Watters
Alliance House,
12 Caxton Street,
LONDON SW1H 0QS
0207 976 7640
e-mail pimmune@dial.pipex.com
fax 0207 976 7641

 The group in associated with the needs of primary immunodeficiency. Some of their members have received large amounts of gamma globulin in the UK. 

Center for Complex Infectious Diseases.

3328 Stevens Avenue,
2nd Floor,
Rosemead
CA, 91770
For more information about CCID and its services, please call (626)572-7288, fax (626)572-9288 or e-mail at ccid@earthlink.net
Please note: CCID's area code has been changed to 626.

Association contre la maladie de Creutzfeldt-Jakob

At the moment we have no address for this organisation in France. If anyone has the correct address, please let us know it. 

Compassion in World Farming

This has acted for many years on the damage that has taken place to farm animals as a result of the economic pressure put onto farmers to increase output.
Contact Tim O'Brien on tmobrien@ciwf.win-uk.net . 

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