Boulden Griffith has
been the Mycosis Fungoides Foundation unofficial welcome
person for Sézary patients since he joined the CTCL-MF
on-line support/information listserv in 1997.
Tom
Andrews of Maryland and Claudia Day of Virginia came to the
American Academy of Dermatology meeting in Washington, D.C.
in March and monitored the Mycosis Fungoides Foundation exhibit.
By staffing the booth, Judith Shea and Judy Jones had time
to attend meetings, while Tom and Claudia gave physicians a
patient's perspective of the disease.
Noal
Cohen has been a member since the beginning of the CTCL-MF
listserv in 1996. He attended a CTCL meeting co-sponsored by
the New York Academy of Sciences and Yale University School
of Medicine, summarizing the proceedings for the CTCL-MF listserv.
Marcia
and Rich Houchens took on the job of copying and sending out
a booklet of journal articles when there was little information
regarding CTCL-MF available to patients. They sent information
packages to hundreds of patients. They gave up their "job" this
year because there is more up-to-date information
Tom
Crabtree has been a list member since 1997. He has done a tremendous
amount of research and has been a valuable resource person.
He has recently moved to the state of Washington and maintains
a web site, http://tomsmfctclpage.homestead.com/index.html,
with lots of CTCL information and links.
Where do you fit in?
Let us know. Contact: Mycosis Fungoides Foundation at www.mffoundation.org,
or call (248) 644-9014.
Join
MFF: donate or volunteer.
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