| MESSAGE
FROM THE PRESIDENT
I am delighted to be sending you this newsletter
at the end of Conquer Fragile X Foundation's third
year!! As I reflect on all that we have accomplished,
I am struck by the great strides we have made
together and the many ways we have influenced
the course and intensity of fragile X research.
With our Parent Groups, and through our newsletter,
we have significantly increased the general awareness
of fragile X throughout South Florida and in the
world. We have had the great fortune to have awarded
and or directly influenced the award of over $1,000,000
to fragile X research projects throughout the
world and to shape the direction of current research.
Our work with the Children's Health Coalition
has resulted in the successful passage of the
Children's Health Act and we continue to monitor
its funding and implementation. Conquer Fragile
X Foundation is now listed on the National Institutes
of Health, National Institute of Child Health
and Development official brochure as a nationally
recognized resource for fragile X researchers
and other consumers. It seems that Conquer Fragile
X Foundation is now among those working at all
levels of the fragile X community. All of this
progress is possible because of the hard work
and dedication of so many people. Each of you
has played a significant role and I thank you.
In the coming years we will continue to work hard
as our job becomes more challenging. We plan to
continue the funding for our existing projects
and increase the number of international projects
funded by CFXF. We will continue to increase the
visibility of Conquer Fragile X Foundation as
we facilitate international dialogue and collaboration
among researchers all over the world. One of our
main objectives is to create a vehicle by which
international projects can be included in the
proposed Fragile X Research Centers of Excellence.
I strongly believe that bringing together all
the research by creating strong collaborations
and linkages will advance us to a cure for fragile
X al the sooner!!
 So
that we can continue to increase our visibility
and continue to achieve the goals of the Foundation,
we must ask your continued support. As the year
comes to a close and you decide the best option
for your charitable dollars, we hope that you
will consider the work or Conquer Fragile X Foundation
and be as generous as you can.
Harris Hollin
President
Cancer Risk Lower
Among Fragile X People
Yet another compelling reason for
continued, intensive fragile X research has emerged.
Dr. Soren-Shultz-Pedersen of Viborg Hospital,
Denmark and a multi-center team report in the
October Journal of Medical Genetics that people
with fragile X have a lower risk of cancer than
individuals without the disorder. People with
fragile X only had 28% of the cancer risk seen
in
|
the
general population. Further studies will be needed
to completely understand this finding, but it
likely may shed light on how genetic mechanisms
prevent cancer from developing. This noteworthy
finding will hopefully attract more research attention
to fragile X as cancer researchers work to identify
the exact relationship. Hardly a month passes
without a further confirmation that X-linked disorders,
such as fragile X, hold clues to cures for a multitude
of other genetic disorders.
Dr.Fry, Ambassador
Naim to visit in February
We are eagerly awaiting a visit from one of our
Israeli researchers, Dr. Michael Fry of the Technion
Institute of Technology and Ambassador Asher Naim,
and overseas member of our Board of Advisors.
Both will be in South Florida the week of February
11, and we will have the benefit of some of their
valuable time. We will keep you informed of meeting
dates and times.
New Parent Group Structure
Announced at CFXF Appreciation Dinner
On Thursday, November 15, 2001 Mr. & Mrs.
Harris Hollin hosted South Florida families and
supporters of CFXF at a wonderful dinner at the
Colony in Palm Beach. The evening was a fun, lighthearted
celebration of the continuing support of our parents,
families, Board of Advisors and other supporters.
Among the guests were Joshua Gammon and Jonathan
Doring, two fragile X young men we are all very
proud of! The dinner featured a cocktail hour
and brief comments by Mr. Hollin, who updated
guests on CFXF's recent activity, announced our
new Parent Group Structure and honored parent
group leaders with certificates of appreciation.
 At
Mr. Hollin's suggestion, the Parent Group recently
adopted a new structure, featuring three functional
areas, within which the group can maximize the
skills and strengths of each member. One parent
representative has been designated to lead in
each functional area;
Tonii Kelly has become the Government and School
Advisor, Randy Green is now our Coordinator of
Parent Group Leaders, and Nilda Serra will server
as the Coordinator of Outreach Activities. Our
CFXF Parent Group does so much to raise awareness
of fragile X in our schools and community and
to help and support each other. We wish them great
success in their new roles. And we also thank
the Executive Assistant to Mr. Hollin, Adrienne
Huston Griffin for yet another meticulously planned,
successful event.
L to R - Harris
& Sande Hollin, Julia Paul-Mondaize, Nilda
Serra, Randy Green, Wende Bands and Kathy Doring
with Certificates of Appreciation
|
