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At the 7th Annual International
Fragile X Conference held in July in Los Angeles,
California, Conquer Fragile X Foundation was represented
by Harris Hollin, President.
Parent Group Leaders: Kathy Doring,
Randy Green and Julia Paul-Mondaizie; Advisory
Board members: Jeffrey Cohen and Ofer David; Scientific
Advisors: Robert Bauchwitz, Jonathan Cohen of
Australia, Brenda Finucane, Randi Hagerman and
Giovanni Neri of Italy; Israeli Scientists: Tsipora
Falik-Zaccai and Mickey Fry. Both Mickey and Tsipora
presented papers. Until now, we had believed the
female carrier rate to be 1 in 259. This was based
on several studies, the largest being 10,000 women.
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Additions to the CFXF Family |
| Dr. Zapora
Falik Zaccai has joined us as Coordinator
of Molecular and Clinical Activities of our
participating institutions in Israel. In the
column describing the 7th Annual International
Fragile X Conference, we reported on very
important research studies presented by Dr.
Zaccai. She will also be working with our
Scientific Advisor, Jonathan Cohen, on a joint
study, which we described in that same article.
Wende Banks is our newest Parent Group
Leader, and she has really jumped into the
activity. In addition to joining Randy Green
at a speaking engagement representing Conquer
Fragile X Foundation at the Florida International
University, she has arranged through her
husband, Kyle Henderson, for a fund raising
golf tournament benefit for Conquer Fragile
X Foundation to be held in the spring of
2001.
Our most recent addition to our Board
of Advisors is Gladys Fichbein of Porto
Allegre, Brazil. Gladys founded the Brazilian
Fragile X Foundation last year, and we look
forward to her very active participation.
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Tsipora's
study is the largest ever done, with 22,000 pregnant
women, and shows a carrier rate of 1 in 120. This
is very significant. As a  result
of his presentation, Mickey and Giovanni got together
and agreed to collaborate on their work to reactivate
the gene. Also, Tsipora and
Jonathan Cohen are working on preparing a joint
study with Australian and Israeli patients to
measure the impact of pharmaceuticals on Fragile
X children. We will ask FRAXA
Arlene (Mrs. Jeffrey) Cohen, Rachel david and
Conquer Fragile X Parent Group Leaders: Randy
Green, Julia Paul-Mondaizie, Kathy Doring
Research foundation for help in funding it. Lastly,
Ofer David is working on a protocol for a device
that we are testing with several families. He
and Harris met with the US distributor.
New Website
Format
Because of the importance of the
role our web site (www.cfxf.org) has played in
attracting and informing Fragile X families and
friends about Fragile X, we recognize the importance
of streamlining our reports and information on
an ongoing basis. We are very fortunate to have
our own Scientific Advisor, Brenda Finucane, and
her husband, Tony Rocha, assisting us as web masters
for our web site. The web site will be updated
on a prompt and continuous basis, and we ask your
support in encouraging people to visit and revisit
us often.
CFXF and NFXF
Working Together
Robby Miller, Executive Director
of the National Fragile X Foundation, has begun
discussions with us regarding our two organizations
working together in the parent support group area.
While the details have not been worked out completely
there is great mutual benefit to both organizations.
NFXF would provide us with a broad range of valuable
printed materials as well as the benefit of many
of their studies and activities. We will be able
to assist the many South Florida residents who
contact the National for information and for a
local resource where they can meet other Fragile
X families, and participate in moving forward
the efforts to help find a cure for Fragile X.
We look forward to this important "team work".
Their focus is primarily on making life better
for people with Fragile X, and our focus is primarily
on finding a cure.
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