ANA Discussion Forum
General Category => NF2 => Topic started by: Susan A on January 11, 2013, 07:30:54 pm
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The NF Network has posted this week's webinar from Dr Asthagiri on their website. For now it's linked right from their front page: http://www.nfnetwork.org/home (I would guess they'll move it to their webinar page eventually: http://www.nfnetwork.org/understanding-nf/webinars)
Dr Asthagiri talked briefly about what the NIH is, and then talked about NF2 and what they have found out through the Natural History Study at NIH. 155 people with NF2 have been participating in MRIs and other checkups at NIH twice a year. The major thing I took away from the webinar is that for all they've learned, there's still a lot to learn! It's worth watching the webinar though if you want to know more about NF2.
I also got a lot out of watching the webinar by Dr Slattery from House in CA on cochlear implants and ABIs for people with NF2. I'm hoping my hearing loss never gets to the point where I have to consider one of those options, but it's still good to have the info in case I ever need it!
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Thanks Susan,
I will check them out when I get some free time. Going to see a genetic counselor for NF2 testing.
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Hi Susan, i dont see it on the front page nor the webinars page.. Could you post a link again if you can find it elsewhere please?
cheers
chris
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Chris,
it is linked right from their front page: http://www.nfnetwork.org/home Look for this image and click on it:(http://www.nfnetwork.org/uploads/image/Webinars/NF2%20Natural%20Study.jpg), or try copying and pasting this really long link to go there directly:http://dl.dropbox.com/u/52204183/2013-01-09%2019.03%20_NF2%20Natural%20History%20Study_.wmv
Susan
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ofcourse... thank you :)