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September 20, 2006 --
It's been a busy, exciting time
for Conquer Chiari with a lot of activities on several different fronts:
Fundraisers -
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The Conquer For Kaya fundraiser
was a HUGE success. Many thanks and much credit go to Debbie Culver
who organized an amazing event. According to Debbie, "We are very
pleased with how well the First Annual Charity Conquer C & S For Kaya
Golf Tournament went. With making a total of $31,865.00, $19,370.00 going
to Conquer Chiari for research, $12,495.00 going towards Kaya's medical
bills, and any left over going to Conquer Chiari. We will start planning
next year's tournament in January with a goal of raising $50,000.00. We
thank all of our sponsors and friends." Way to go Debbie!
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Michele Louria is organizing
the first annual CARE (Chiari Awareness & Research Enhancement) Walkathon
to be held Oct. 7th in Wayland, Michigan. More info can be found
here. Thanks
Michele and good luck!
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Running For Research has
expanded this year to include three runners: Annie Sharich, Ray
D'Alonzo, and Adele Morgan. Each will run a different marathon this
fall to raise awareness of Chiari and money for research. I'm sure
they are training hard and invite you to joint me in wishing them luck.
More info and an on-line pledge form can be found
here.
Research Grants -
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Conquer Chiari's first call for
research proposals was an overwhelming success. We received 23
proposals from researchers and doctors all over world. Many of the
proposals represent exciting new avenues of investigation and are worthy
of funding, but unfortunately we do not have the money needed to fund them
all. Our review committee has studied the proposals and made a
unanimous recommendation to the Board of Directors to fund the single best
project. The Board will meet later this month to approve the grant
at which point we will announce the winner. The response we got is
an indication that we can make a difference in the fight against Chiari,
but we need money to do it. I encourage you to follow the example
set by Debbie, Michele, Ray, Annie, and Adele above, and get involved in
raising money for research.
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Dr. Noam Alperin, a medical
physicist at the University of Illinois-Chicago has received an NIH grant
to study the clinical value of compliance as it relates to Chiari.
Compliance has been discussed in several articles in the
newsletter
archives. and may prove to be a valuable measure of Chiari symptoms
and surgical success. The goals of the project are:
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To improve Intracranial
Compliance (ICC) measurement reproducibility by implementing a new MRI
data acquisition scheme.
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To determine the role of MRI
measurements of ICC in Chiari
Malformations.
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To compare MRI-derived
Intracranial Pressure (ICP) values with invasive ICP in patients
undergoing ICP monitoring.
Before Conquer Chiari was
formed, I (and some of the supporters of Conquer Chiari) were involved in
sponsoring Dr. Alperin's early work in this area. This is a
validation of our research strategy of providing scientists with
relatively small grants which enable them to develop their ideas to the
point where they can pursue larger funding through the NIH. I plan
on meeting with Dr. Alperin later this year to learn more about this
exciting project.
Awareness -
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Conquer Chiari, and myself,
were featured on the cover of Northern Connection Magazine. Northern
Connection is a regional publication which serves the north suburbs of
Pittsburgh. From feedback I have received, the article was a great
success in raising awareness of Chiari on a local level. The article can
be found here.
This is the type of awareness activity which anyone can pursue. Make
a list of local publications, think about how you want to pitch the story
idea, and then make some calls. Usually a combination of a personal
story along with information about the disease is what the publications
are looking for. If anyone finds someone interested, I am always
available to help with the article in any way.
-- Rick Labuda
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