http://health.groups.yahoo.com/group/ATRT/ Atypical Teratoid Rabdoid Tumors Mon, 22 Jun 2009 22:49:50 GMT Danielle McCauley http://health.groups.yahoo.com/group/ATRT/message/183 http://health.groups.yahoo.com/group/ATRT/message/183 Hi atrt@yahoogroups.com, I set up a Facebook profile where I can post my pictures, videos and events and I want to add you as a friend so you can see it. Tue, 25 Nov 2008 00:27:55 GMT loicebill http://health.groups.yahoo.com/group/ATRT/message/182 http://health.groups.yahoo.com/group/ATRT/message/182 The foundation, Smiles for Sophie Forever, is creating an "awareness tree" for the holiday season to raise awareness about pediatric brain tumors. The tree Sat, 25 Oct 2008 15:34:50 GMT M Kees http://health.groups.yahoo.com/group/ATRT/message/181 http://health.groups.yahoo.com/group/ATRT/message/181 Phone interview for ATRT families with Dr. Jaclyn Biegel of CHOP - 12/3 @ 7PM ET Jeff Shaddix, Jonathan Shaddix's dad, has talked with Dr. Jaclyn Biegel, the Fri, 17 Oct 2008 21:20:07 GMT KCJoeNSuz@... http://health.groups.yahoo.com/group/ATRT/message/180 http://health.groups.yahoo.com/group/ATRT/message/180 Joey was considered an Atypical ATRT- I thought it was because it was located in his neck versus the CNS or kidney. He does has the gene deletion. Hopkins Fri, 17 Oct 2008 19:25:01 GMT isisreturning2m http://health.groups.yahoo.com/group/ATRT/message/179 http://health.groups.yahoo.com/group/ATRT/message/179 oh, i think they mean it's atypical because she does NOT have the gene deletion, whereas most kiddos with ATRT do have the deletion, in the tumor cells or all Thu, 16 Oct 2008 22:25:06 GMT Walsh, Paige P. http://health.groups.yahoo.com/group/ATRT/message/178 http://health.groups.yahoo.com/group/ATRT/message/178 You read my mind. I'm going to discuss with the doctors. ________________________________ From: ATRT@yahoogroups.com on behalf of M Kees Sent: Thu 10/16/2008 Thu, 16 Oct 2008 21:09:31 GMT M Kees http://health.groups.yahoo.com/group/ATRT/message/177 http://health.groups.yahoo.com/group/ATRT/message/177 Paige - I wonder if Charlie's shoulder tumor was a schwannoma or neurofibroma. I know nothing about these two tumors, except that apparently they are also Thu, 16 Oct 2008 21:08:20 GMT M Kees http://health.groups.yahoo.com/group/ATRT/message/176 http://health.groups.yahoo.com/group/ATRT/message/176 Hi Mette, Can you give more specifics as to what the doctors mean when they say "Atypical ATRT?" Michelle To: ATRT@...: Thu, 16 Oct 2008 21:03:31 GMT isisreturning2m http://health.groups.yahoo.com/group/ATRT/message/175 http://health.groups.yahoo.com/group/ATRT/message/175 Hi All - Zoe Earlywine does NOT have the INI-1 deletion. Her docs have noted that she has atypical ATRT. We have not been tested. No history of brain tumors on Thu, 16 Oct 2008 18:07:20 GMT Maria Bölja http://health.groups.yahoo.com/group/ATRT/message/174 http://health.groups.yahoo.com/group/ATRT/message/174 Hi, Thanks for your email. Short reply to your answer as I am soon of to bed. It makes me wonder if we have this gene. I know that they have tested us but not Thu, 16 Oct 2008 18:07:04 GMT Maria Bölja http://health.groups.yahoo.com/group/ATRT/message/173 http://health.groups.yahoo.com/group/ATRT/message/173 Hi, Thanks for your email. Short reply to your answer as I am soon of to bed. It makes me wonder if we have this gene. I know that they have tested us but not Thu, 16 Oct 2008 18:04:33 GMT Walsh, Paige P. http://health.groups.yahoo.com/group/ATRT/message/172 http://health.groups.yahoo.com/group/ATRT/message/172 Charlie Walsh INI1 Gene Deletion in tumor and all cells Neither parents or other three siblings has the deletion My second cousin died of a brain tumor when Thu, 16 Oct 2008 18:04:33 GMT babyella418 http://health.groups.yahoo.com/group/ATRT/message/171 http://health.groups.yahoo.com/group/ATRT/message/171 My daughter Sophiella has INI 1 gene mutation Neither parents have it No known related disease in either of families ... about genetic issues on our ATRT Thu, 16 Oct 2008 18:04:33 GMT Rachel Perez http://health.groups.yahoo.com/group/ATRT/message/170 http://health.groups.yahoo.com/group/ATRT/message/170 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 Thu, 16 Oct 2008 18:04:33 GMT ShadMan http://health.groups.yahoo.com/group/ATRT/message/169 http://health.groups.yahoo.com/group/ATRT/message/169 My son, Jonathan Shaddix, had the genetic testing which showed that the mutation is present in every cell (Rhabdoid Predisposition). Neither my wife or I have