Author Topic: NF2 webinar  (Read 5003 times)

Susan A

  • Full Member
  • ***
  • Posts: 111
NF2 webinar
« on: November 22, 2011, 05:06:13 am »
I found this over at the nf2crew website:

NF Network (NF Inc) is pleased to present an NF2 Webinar on November 30th, 2011.  You don’t want to miss this webinar with guest presenter, and NF2 expert Dr. Scott Plotkin, MD, PhD.  Just a couple of the topics Dr. Plotkin will discuss are advancements in NF2 research and the genetic inheritance of NF2.

http://nfnetwork.org/blog/view/nf2-webinar-with-scott-plotkin-md/

2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

producer

  • Jr. Member
  • **
  • Posts: 60
Re: NF2 webinar
« Reply #1 on: November 22, 2011, 06:04:51 am »
Looking forward to this..
Mosaic NF2  diagnosed march 2011.

9mm x 6mm x 6mm left VS

Cyberknife 3 day treatment completed May 2nd.

New girl

  • Full Member
  • ***
  • Posts: 169
Re: NF2 webinar
« Reply #2 on: November 22, 2011, 04:53:42 pm »
Thanks for posting that.  I just registered!  :)
9mmx14mmx9mm
Diagnosed 6/1/2011
Retrosigmoid Surgery 9/27/2011
Daniel Lee (MEEI) & Fred Barker (MGH) - Exceptional Surgeons

producer

  • Jr. Member
  • **
  • Posts: 60
Re: NF2 webinar
« Reply #3 on: December 01, 2011, 04:25:45 am »
I must sat I was a little disappointed with this, primarily because more than half the 1hr session went  by explaining the basics of NF2.  I thought it was going to be focused on advancements on research in NF2 but barely touched the subject.

Id imagine we need another webinar on that issue alone and nothing else.

On the other hand great to see Dr Plotkin putting in his private time to provide live information  to us, definitely appreciated.


chris
Mosaic NF2  diagnosed march 2011.

9mm x 6mm x 6mm left VS

Cyberknife 3 day treatment completed May 2nd.

Archer

  • Jr. Member
  • **
  • Posts: 77
Re: NF2 webinar
« Reply #4 on: December 02, 2011, 10:30:42 am »
I sat through the Webinar and got quite a bit of info I hadn't known.  Of course, in my case as newly diagnosed with NF2, Any info would be good and new to me.  Still learning about what this all means.  I understand ANs as I had on removed ten years ago.  Now, with one on the other side, I have to learn a new subject of NF2.