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WELCOME TO SHARE AND CARE COCKAYNE SYNDROME NETWORK HOME PAGE
NEWS! Teresa Wall is now editing the "original" Share and Care Web Page. To see it, go to: http://www.kimbanet.com/~cockayne
Share and Care Cockayne Syndrome Network, Inc.
The Share and Care Cockayne Syndrome Network
Inc., P.O. Box 552, Stanleytown VA 24168;
(540) 629-2369 phone, 647-3739 fax, cockayne@kimbanet.com E-mail, is a support
group
providing information to families and professionals with an interest
in Cockayne Syndrome (CS). A newsletter provides a forum for the
exchange of information and a pamphlet is available in English,
Spanish, and Japanese.
Share and Care was started by Pat Cahill in 1981 when her son, Scott,
was diagnosed with CS. Pat mailed newsletters to a small group of
families that steadily grew over the years. In 1993, Share and Care
expanded when Teresa Wall got involved after her late daughter, Candice,
was diagnosed. This expansion was made possible only by the
encouragement and support of Dr. Thaddeus Kelly at the University of
Virginia in Charlottesville.
The Mid-Atlantic Regional Human Genetic Network (MARHGN) provided
"seed money" from 1993 to 1996. The Share and Care CS Network, Inc. is
now a self-sufficient, non-profit organization that continues to grow.
Cathy Garrott, a missionary in Japan, helped to get the pamphlet
translated and then started a support group there in 1995. Cathy and
her husband, Jack, have done a tremendous job in providing support in
Japan. Mrs. Arfa Khan merged her support group in England with Share
and Care in 1996. Mrs. Khan has almost 20 years experience with CS
from caring for her son, Waqaus.
Share and Care continues to reach out to those around the world who
are dealing with this devastating syndrome.
Links:
What
is Cockayne syndrome?
What
causes CS?
Brain Injury
in CS
What can be done about CS?
Cockayne's
Syndrome Handbook
CS
lab tests (what are the tests)
CS Labs
(who does the testing)
Possible Future CS therapies (by David Busch)
Gene
therapy concerns (more about limitations of future CS therapies, by Koos
Jaspers)
"Real" Share and Care home page (the page you are reading is a draft of a
revision known only to a select few!):
Share & Care
Names and addresses:
Ms. Roberta Bliss Albert=ROBBLISS@aol.com.
David Busch, Ph.D., M.D. (+ Web Page editing)
AFIP-CPV
Washington DC 20306-6000
(202) 782-2849 phone,
(202) 782-7164 fax
dbbusch@netrax.net
Pat Cahill
1294 "S" St.
North Valley Stream, NY 11580
(516) 825-2284
James Cleaver, Ph.D.
UCSF Cancer Center, Box 0808
University of California San Francisco,
San Francisco, CA, 94143-0808
The street adddress is 2340 California Street
Phone (415) 476-4563
JCleaver@cc.ucsf.edu
Cathy (Mrs. Jack) Garrott
1-137-3 Koba
Omura, Nagasaki 856-0046
JAPAN
TELEPHONE: 81-957-54-3734
FAX: 81-957-54-8240
cs@shinsei.org
Nicolaas G.J. "Koos" Jaspers, Ph.D.
Erasmus University
P.O. Box 1738
3000DR Rotterdam, The Netherlands
011 31 10 4360225 fax
jaspers@gen.fgg.eur.nl
Mr. Jay Keating=JAKEATING@aol.com
Thaddeus E. Kelly, M.D., Ph.D.
Director, Medical Genetics
University of Virginia Hospital
Charlottesville VA 22908
(804) 924-2665
tek8s@virginia.edu
Mrs. Arfa Khan
18 Eden Way
Brickhill, Bedford MK 41 7EP
Phone 011-441-234-446855
tmkhan@msn.com
Ken Kraemer, M.D.
National Cancer Institute
Bldg 37 Room 3E24
National Institutes of Health
Bethesda MD 20892
(301) 496-9033 phone
(301) 496-8419 fax
khk@helix.nih.gov
Alan Lehmann, Ph.D.
MRC Cell Mutation Unit
Sussex University
Falmer
Brighton BN1 9RR England
011 44 1273 678120phone
011 44 1273 678121 fax
a.r.lehmann@sussex.ac.uk
Share and Care Cockayne Syndrome Network Inc. or Teresa Wall
P.O. Box 552
Stanleytown VA 24168
(540) 629-2369 phone
(540) 647-3739 fax
cockayne@kimbanet.com
Xeroderma Pigmentosum Society, Inc.
PO Box 4759
Poughkeepsie, NY 12601
(914) 473-4735 phone
xps@xps.org
Let me know what you think about my page. Send mail by clicking here.
Click here to send E-mail to Roberta Bliss
Albert.
Click here to send E-mail to David
Busch.
Click here to send E-mail to James
Cleaver.
Click here to send E-mail to Cathy (Mrs.
Jack) Garrott.
Click here to send E-mail to Nicolaas
G.J. "Koos" Jaspers.
Click here to send E-mail to Jay
Keating.
Click here to send E-mail to Thad
Kelly.
Click here to send E-mail to Mrs. Arfa
Khan.
Click here to send E-mail to Ken
Kraemer.
Click here to send E-mail to Alan
Lehmann.
Click here to send E-mail to Share
and Care or Teresa Wall.
Click here to send E-mail to Xeroderma Pigmentosum
Society, Inc.
is the number of times Web sites using this screen name (DBBusch) have been visited since counter installation 3/5/98.