| MESSAGE
FROM THE PRESIDENT
I am happy to share with you many of our activities
since our last newsletter in March. You will read
about Nilda Sierra, our most recent Parent Group
Leader, Michael Leone, a leading professional
in our community, who has joined our Business
Action Committee. We have added a grant writer,
Karen Fay, whose role in our efforts is of exceptional
importance, not only in terms of fundraising but
also in broadening the scope of our relationships
with significant research institutions that can
help us in our ultimate objective, to find a cure
for Fragile X.
Every member
of our CFXF team strongly cares about our objectives;
some because they are directly affected in their
own families, others because they recognize the
serious waste of human potential as well as the
vast amount of suffering caused by the affliction.
But whatever the individual reasons, I thank all
of you for the important part you are playing.
I also have
to thank my grandson, Matthew, the inspiration
and motivation behind CFXF. ....Thank you, Matthew,
my pal, because of you, my efforts have made me
a better person. Besides that, when I see you,
and you holler, “Poppi” and come running
to me for a hug and a kiss, I light up inside
and out.
Harris Hollin
President
New Research Breakthrough -
Continued Research is Critical!!
The Discovery
Very recently, Dr. Randi Hagerman, a Conquer Fragile
X Foundation Scientific Advisor and the Director
of the MIND Institute at the University of California,
Davis, made an exciting (and unpredictable) discovery
with regard to Fragile X
A team of scientists, led
by Dr. Hagerman, has discovered that some men
who carry the gene for fragile X syndrome develop
tremors, memory problems and other debilitating
neurological problems later in life. After noting
elevated levels of messenger RNA (mRNA) in several
children, subsequent discussion of family histories
led the research team to the grandparents.
|
 Dr.
Hagerman notes that each of the men observed first
noticed tremors in one hand when in his 50s or 60s.
Their problems have progressed over a number of
years to the point that the men are severely limited
in performing normal daily activities. All of the
men have at least one grandchild with fragile X
syndrome. “Although we have discovered a set
of problems in these men that appears to be a previously
unidentified syndrome, we still need more research,”
Dr, Hagerman said. “We have no idea at this
point how prevalent this
disorder is among grandfathers of fragile X children.”
Continued Research
Why is the unique international focus of CFXF
so critical?? Because scientists and researchers
simply cannot predict where the next breakthrough
in Fragile X research will come from - Fruitfly
research in Pennsylvania or a twin study in Australia
could provide important new insight.
Critical data, such as that reported by Dr. Hagerman's
team, is often incidental to the primary research
and data collection. CFXF-supported research by
the top investigators at the Hebrew University,
Technion and Weizmann are pivotal pieces of the
universe of current research - Information sharing
through the Conquer Fragile X Virtual Research
Center is critical!!
With your support, the Conquer Fragile X Foundation
is committed to providing researchers with the
flexibility they need to pursue the most promising
avenues of research, whether planned or in response
to unpredictable findings.
Visit our Website often!!
See our website for new features including Scientific
Advisor Gideon Dreyfuss' most recent paper and
a press release about Scientific Advisor Randi
Hagerman's latest fragile X related discovery.
Our website also provides links to other sites,
including hollinbooks!! |
