My son was diagnosed with ewings in 2000 at age 18 and lived 2 years-he went
through the gambit of treatment-how can we find out if others in our regions or
cities also were diagnosed. I am very interested in finding links if there are
any to this disease, Hats off to Bernie for his persistance in understanding and
fighting this very untalked about disease of our children. I would be willing to
do any research that could assist in compilying information to better understand
this disease. I am from Oregon if needed.
 
Teresa


--- On Wed, 2/11/09, Sharon Kory <sharonlkory@...> wrote:

From: Sharon Kory <sharonlkory@...>
Subject: Re: [Ewings Sarcoma] 2 cases of Ewing's in friends, Beverly,
Massachusetts
To: ewingssarcoma@yahoogroups.com
Date: Wednesday, February 11, 2009, 7:28 AM






Bernie,
I believe I have written you in the past regarding our personal experience with
Ewings. My son, diagnosed at age 18 in year 2000 was one among a group of 5 in
our area that were diagnosed around the same time. We live in a suburb of
Detroit, called Bloomfield Hills.  If there is any information that I can offer
to help with your investigation, I would be happy to provide it. This is a noble
effort on your part and I can say personally, it will mean alot to end some of
the mystery surrounding this disease. Fortuneately, our son is a survivor, but
the experience will never escape us.

Sharon Kory
 
Sharon Kory Interiors Inc
29000 Inkster Rd. Suite 120
Southfield, MI 48034
phone:    248.357.3600 ext 203
fax:         248.357.3646

--- On Fri, 1/30/09, bjyoung716 <no_reply@yahoogroup s.com> wrote:

From: bjyoung716 <no_reply@yahoogroup s.com>
Subject: [Ewings Sarcoma] 2 cases of Ewing's in friends, Beverly, Massachusetts
To: ewingssarcoma@ yahoogroups. com
Date: Friday, January 30, 2009, 11:36 PM

Friends:

This program ran on TV a few minutes ago:

http://wbztv. com/health/ ewings.sarcoma. rare.2.923006. html
<http://wbztv. com/health/ ewings.sarcoma. rare.2.923006. html>

The statistical analysis (average, standard deviation) of the
Masachusetts Department of Public Heath and Air Force data on the PAVE
PAWS was in error. The nature of the error is that average values are
under-reported and standard deviation values are unstable and, for most
practical purposes, useless.

Anyone who is aware of unusual patterns of cases of Ewing's is asked to
report them here. I am preparing a request of out congressional
reperesentative for federal funding of an independent, dilligent,
multidisciplinary study of the Ewing's sarcoma cluster on Cape Cod. I
have some moral support from epidemiologists at a local university.
Senators in two other communities have funding for university
investigations of cancer clusters among their constituents. With no
known risk factors for this disease, and these peculiar patterns showing
up, an investigation seems like a no-brainer.

Bernie

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