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AMN meet-up in Austin, Texas?

bsc78 Message
15 Apr 2014, 02:27 AM

At my annual appointment with Dr. Florian Eichler (Mass Gen/Harvard), we discussed the lack of AMN experts or neurologists with significant experience treating AMN patients in Texas (or in the South, for that matter). He suggested that a meet-up in Austin could help facilitate communication between AMN experts and those who suffer from it, as well as allow an opportunity for those diagnosed with AMN to compare notes. I volunteered to organize it and tentatively suggested sometime in October of this year. I'm sending this message to gauge interest in attending such an event. If you are interested or know someone that may be, please respond to this message or to me personally by email, I have also posted this message in the (ULF) discussion boards as well. Any assistance or recommendations on spreading the word would be greatly appreciated. Regards, Brian Chandler
Unsworthj Message
15 Apr 2014, 03:21 PM

Hi Brian, Thanks for the idea and thanks for volunteering to start to organize. I live in Fort Worth Texas and do not have a neurologist because I know of no Doc in Texas who has even heard of AMN or ALD. If I could find a doc here, I'd gladly go to Austin to meet up. Where are you located? I recently spoke with David Cry (in NOLA) and he said he would check around for me. I'll keep you posted if I find out anything. Let me know if you want my e-mail / phone #. Thanks again, John Unsworth
dryder845 Message
18 Apr 2014, 07:58 PM

Small world, my son and I also see Dr. Eichler at Mass General. This is a wonderful idea and hope that I would be able to make it. It's is so important that people with AMN have a Dr that understands and is working for a cure like Dr. Eichler.
dryder845 Message
18 Apr 2014, 08:00 PM

Also without David Cry, we wouldn't have found Dr Eichler so I am hopeful that he can find you someone John.-
tmathwig Message
31 Aug 2014, 01:47 PM

I live in Dallas and would be interested in this opportunity in Austin. Is there anything planned for October yet?
bsc78 Message
3 Sep 2014, 02:44 AM

Thank you all for your interest. Even though the responses have been limited, I'm still interested in putting together an informal meet-up in Austin for those who are looking to develop a regional network for information sharing and support. I think this Spring may work, perhaps March. Again, please spread the word.
dryder845 Message
3 Sep 2014, 02:42 PM

You can also send to Dr Eichler has started this site for us to connect with each other and stay up to date progress of research on this horrible disease.