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FROM THE PRESIDENT
This Spring and Summer of 2002
will be an exciting time for Conquer Fragile X
Foundation and the entire fragile X community.
Two of the main fragile X-related events in the
offing are the National Fragile X Foundation 8th
International Fragile X Conference in Chicago
and the application by a number of highly qualified
and respected research centers for a large National
Institutes of Health Fragile X Research Center
award.
From July 17 through the 21st, the
National Fragile X Foundation will sponsor the
8th International Fragile X Conference in Chicago,
IL. CFXF will provide mini-travel grants to its
Parent Group Leaders to sponsor their attendance
at the conference. Jonathan Doring, son of Parent
Group member Kathy Doring, both of whom you will
read more about in this newsletter, will be a
speaker at the conference. Each Parent Group Leader
has developed an agenda of issues they wish to
address while at the conference. The conference
promises to be an opportunity to build the capacity
of the S. Florida CFXF community to spread the
word about the latest Fragile X scientific and
medical practices.
On July 23, 2002 we anticipate the
submission of some creative and innovative research
proposals in response to the National Institutes
of Health RFA (Request for Applications) for the
Fragile X Research Centers of Excellence. In total,
over 2.75 million dollars will be awarded on a
competitive basis to the successful applicants
in order to bring together the most important
clinical and scientific work in the area of fragile
X. The NIH is asking for some creative domestic
and international collaborations to respond to
this request, and CFXF has been working to facilitate
dialogue among some likely US proposers and our
researchers abroad. We will keep you posted as
this process unfolds.
As CFXF's presence throughout the
fragile X community grows, the number of funding
proposals we receive grows as well. We have been
honored in the past few months to receive a number
of inquiries and proposals from some top fragile
X researchers around the globe. Remember…Conquer
Fragile X Foundation is the only foundation whose
priority is funding fragile X research abroad!
This issue of our Newsletter features
a recent visit from Dr. Mickey Fry, of the Technion-Israel
Institute of Technology. It was a wonderful visit;
Dr Fry is a delightful person and a top-notch
researcher. Our parents, board members and friends
enjoyed his visit and learned much from him; please
read about his visit.
I hope that as we move toward spring
and summer, and many of our supporters and
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friends
venture around the country and the world, we all
remember the important work being done every day
by fragile X scientists who need our continued
support. We must remember, too, the struggle faced
each day by all those affected by fragile X and
their families. Please remember Conquer Fragile
X Foundation as you consider your charitable giving
for the coming year.
Harris Hollin
President
FEDERAL FUNDING OF FRAGILE
X RESEARCH INCREASES BY 60%
Recently, Mr. David Busby, a FRAXA director,
fragile X parent and active Coalition for Children's
Health member, wrote in a letter to CFXF and others
that, "funding by the National Institutes
of Health has increased in just the last 2 years
from $7,128,000 to $11,698,000, (or from about
$7 to $11 for each American suffering from fragile
X.) This would not have happened without your
efforts, but it is not enough. Don't stop now,
we are on the cusp of finding treatment and cure
for fragile X."
Many people from all over the country have worked
very hard to ensure that these funds have been
allocated, and that the quality of research remains
high. To all our friends who are legislators,
policy makers, medical care administrators and
supporters, we thank you for all your help, especially
for the passage of the Children's Health Act of
2000 and the Fragile X funding in it. We also
ask that you continue to increase and enhance
the federal funding of research to find a treatment
and cure.
It is important that those who build budgets
and make laws continue to be informed of the impact
of their decisions on the communities that they
benefit. This legislation and funding has been
pivotal for fragile X research. Don't forget to
thank your legislators!!!
HEALTH TRACKING NETWORK
A PRIORITY
Legislation for a Nationwide Health Tracking
Network has been introduced and members of the
Coalition for Children's Health have worked very
hard bringing this very important endeavor this
far. The Fiscal Year 2002 budget gave the Centers
for Disease Control funds to establish pilot projects
for tracking chronic diseases such as cancer,
asthma, multiple sclerosis and others that are
responsible for over 70% of all deaths in America.
For the latest on health and care trends all
over the country and in your state, visit the
website of fellow Coalition for Children's Health
member, the Trust for America's Health, at www.healthyamericans.org
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