Lynch syndrome Community Group

Non-polypopis colon cancer

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torch100 10/17/2010

Hi Everyone,

I am having a difficult time finding a list of people doing research on Lynch syndrome. I can't find any papers written either. All I find is generic blurbs stating almost the same information over and over.

I am really looking for someone in the Philadelphia area. Any suggestions?

Thanks,
Maryeileen

deleted_user 10/17/2010

I responded to you and offered some leads on another thread. I'm also from the Phladelphia area. I don't know anyone specifically doing research here butI love my doctors at HUP. I wrote to Dr. Lynch himself, and he sent me an article and the name of colleague in Delaware who did my genetic testing. Also, have you contacted Lynch Syndrome International? They were enormously helpful to me.

torch100 10/17/2010

Thanks. I did see your other message and wasn't sure if it was appropriate to out and out ask you who your doctors are. I did follow up on the leads you posted but it really didn't say who was doing what. I will revisit and search harder. My docs at Penn are Rustigi (gi & genetics) and Pegliese (derm). I joined LSI, thank you, they are good. I should e-mail them directly. Thank you again.

deleted_user 10/17/2010

No problem. My doctors are Rustgi (gi) and Fakharzadeh (derm), I believe most of the research is being done at M.D. Anderson. I'm part of two research studies there.

deleted_user 10/18/2010

I am part of a research study through MD Anderson Cancer Center.... contact Stephanie Boyd-Rogers at 713-563-4598 sgrogers@mdanderson.org
And.... I was going to suggest LSI also..... but I see you have already found them! :-)

imsb1 02/09/2011

google: Ms1, Ms2,MS6, mismatch repair gene. Google University of Pa hospital atten: Genetics. They are doing some very big research. Also the NIH (national institute of health) has ongoing research and many links to other studies. good luck.

deleted_user 06/03/2012

Are they still doing a recearch? I would join... Thanks.

Ali47 06/05/2012

Hi Torch100, I also live in the Philadelphia area. I am involved in a program through Lankenau Hospital. I also see a gastro/oncologist through Jefferson, and they have a study going on as well. The genetics team I work with through Lankenau are wonderful. They keep me updated on discussion, forums, and gatherings going on. They are in the midst of planning something I believe in the Fall. I will post it when I have more information. The doctor on my genetics team just sent me a thick update on the latest information for screenings and such. Let me know if you want any of these contacts, and I will happily get the information for you. Take Care.

deleted_user 06/15/2012

I am part of a research study through MD Anderson Cancer Center with Stephanie as well :D which reminds me I need to send my yearly packet!!!

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