my son Michael had the INI 1 deletion test and his results were negative. he
also had the p53 test and those results were negative as well. michael does have
the ini 1 deletion in the tumor but not anywhere else throughout his body.
michael's grandmother(my mother) was diagnosed with a glioblastome multiforme
grade 4 in august 2008. she is 60 years old



----- Original Message ----
From: "KCJoeNSuz@..." <KCJoeNSuz@...>
To: ATRT@yahoogroups.com; atrt@yahoogroups.com
Sent: Thursday, October 16, 2008 8:18:18 AM
Subject: Re: [ATRT] Schwannomas and ATRT


My child Joey had the genetic testing.
He does have the INI 1 deletion.
No one else in our family was tested and will not be tested.


In a message dated 10/16/2008 8:16:44 A.M. Eastern Daylight Time,
mkees73@hotmail. com writes:

Tara,

Great question, and good area to explore further. There hasn't been alot of
discussion about genetic issues on our ATRT board, and it is an area of
critical importance.

Could EVERYONE answer the following question:

Has your child had the genetic testing?
What were the results?
For those with the INI1 deletion, is it just in your child or also in a
parent?
Any with a family history of schwannomas or neurfibromas?

I will go first.Andrew Padfield
INI 1 deletion in the tumor and in all cells
Neither parent has the deletion
Andrew's great grandfather died from a brain glioma in his 60s.

To: _ATRT@yahoogroups. ATRT@ya_ (mailto:ATRT@yahoogroups. comFrom) :
_DegoBoo02@aol. DegoBoo_ (mailto:DegoBoo02@aol. comDate) : Thu, 16 Oct 2008
05:32:08
+0000Subject: [ATRT] Schwannomas and ATRT

Many of you may or may not know of our our daughter, Mattea. She was
diagnosed with ATRT in July 2006. We obtained one of the last openings in THE
PROTOCOL that many people are now basing their own treatment off of. Mattea will
be
2.5 in November and is doing wonderfully. She is 27 months from diagnosis
and 1 year off of treatment. Her most recent scan, on August 25th, was stable.
As far as she is concerned, things couldn't be much better.When we realized
we were pregnant with our second child, we underwent extensive genetic testing
in hopes of ruling out suspicion that our experience with ATRT was the
result of a genetic issue. Unfortunately, we were told that Mattea, and my
husband
Mike both have the INI-1 gene mutation (and in their case, a total
deletion). Further testing revealed that our second child, Mackenzie, does not
have
this mutation. One of the primary issues that Dr. Biegel (Children's Hospital
of Philly) is trying to address is, why do some people with INI-1 suffer from
these vicious cancers while others with the same mutation develop benign
schwannomas and neurofibromas. So far, it's a mystery. Anyway, we are now a
multi-generation family with the presence of this gene mutation and the
following: ATRT, possible medulloblastoma (diagnosed in the early 1960s),
Schwannoma,
and Neurofibromas. Many of you may or may not know of our our daughter,
Mattea. She was diagnosed with ATRT in July 2006. We obtained one of the last
openings in THE PROTOCOL that many people are now basing their own treatment off
of.

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