MSAA live event on MS research updates December 16

[agate]

I received this notification in an e-mail from the MS Association of America (MSAA). If you can't see all of it, there's a horizontal scroll bar at the bottom of the post:

The Multiple Sclerosis Association of America (MSAA), in partnership with Medscape Education and WebMD Education, is pleased to present a free event for individuals with MS and care partners on Facebook Live on December 16, 2017 titled, The Latest MS Research Updates in 2017: A Review of the Most Promising MS Research Happening Now. This live event will begin streaming on Saturday, December 16, 2017 at 11:00 AM Eastern. Please follow the Only registered and activated users can see links., Click Here To Register... and Only registered and activated users can see links., Click Here To Register... Facebook pages prior to the presentation to receive a Facebook reminder about the event. During the event, you will hear about some of the most recent MS research updates and findings from a panel of medical professionals, including: Stephen Krieger, MD Associate Professor of Neurology, Icahn School of Medicine at Mount Sinai & Corinne Goldsmith Dickinson Center for MS, Mount Sinai Hospital Jong-Mi Lee, NP Stanford MS Center Claire Riley, MD Assistant Professor of Neurology, Columbia University & Medical Director, Columbia University Multiple Sclerosis Center Rachael Stacom, MS, ANP-BC, MSCN Independence Care System & Bronx Lebanon MS Center To participate in the Facebook Live online event: First, make sure to “Like” the Only registered and activated users can see links., Click Here To Register... page to follow their posts Then, tune in to their page at 11:00 AM Eastern on Saturday, December 16 to view the live streaming presentation If you do not have a Facebook account or would prefer not to watch on Facebook, the event will also be streaming live via Only registered and activated users can see links., Click Here To Register... Please note: If you are in the New York City area and would like to attend this event in person, you can learn more at Only registered and activated users can see links., Click Here To Register.... Funding in support of this event has been provided by Genentech and Celgene.

[Virginia]

I wish I had a way to get this to a lady who works with my hairdresser. Her 19 year old niece was just recently diagnosed with MS. We were talking today and she was asking me questions. I will not be going out again before Friday, so no way to get it there.

Thank you Agate!

[agate]

Many of these live streaming events are available later, at least for quite a while. I think this one will be available for later viewing but I'm not sure. I'll let you know when I find out more.

[Virginia]

Agate, I just watched this on the link you gave. I forgot about this morning at 11:00A.M. Also, was so tired that I stayed in bed until 11:15. I maybe got a little out of it, but it was not something that I would bother to tell the lady I was talking about anything about it. I think her 19 year old Niece is too early diagnosed for most of it. Although, in the beginning they did talk about early diagnoses and how important it was and how important it is to get on treatment. But much of it even I did not understand because of the clinical words that were being used. Cherie would understand it and I think you and maybe some others on here would.

I have been bad about just paying attention to things that I think might help my situation or the situation of someone on here. In doing that I have kind of let the rest of it go. If you listen I would like to get your take on it. Very often I can understand a lay person better and what they are saying than I can some of this. Also, I was having a little problem with the audio. I could here the man really well, but the other lady Doctor seemed to kind of mumble a little and I could not hear the other NPs as well as I could him.

[agate]

I forgot about it too, Virginia, even though it was written on my calendar. I neglected to look at the calendar!

But usually these Webinars are available afterwards and I was able to watch it. I agree with you that a newly diagnosed person might not find this to be anything but tedious. There's a brief segment at the end with some common-sense practical advice about managing MS that might be helpful. Otherwise, unless the person is fairly interested in research findings, the Webinar might not be useful.

But if she knows what type of MS she has, she might want to run through it anyway as they discuss upcoming therapies for each type.

I thought it was very well done. No closed captioning was available so far as I could tell, but I turned up the volume for the voices I had trouble understanding.

If I heard right, at about the 56:20 point, the woman named Jong Mi-Lee, who is a nurse practitioner, talked about the new drug ibudilast, saying it is to be used for SPMS. I believe she said that it's been shown to stop brain shrinkage, maybe even to reverse it, but I can't believe I heard right about reversing it.

I'll be keeping an eye on ibudilast. Your niece might want look at the Webinar and single out whatever drugs she thinks might work for her and watch for news about them. They discussed fingolimod, ozanimod, ANTI-LINGO, ocrevizumab, and ibudilast, mainly.

[Virginia]

I was hoping they would talk about the efficacy of these drugs and who should maybe get what. By that I mean SPMS vs PMS. I have my volume up as much as it will go, but it is not doing well lately, so that was part of my problem. I too heard something about reversing brain shrinkage but kind of thought that was something they were going to be working on hopefully soon.

Thanks for your input. At least you agree with me on the 19 year old newly diagnosed.

[agate]

In a way they did discuss the drugs by taking them in order. They started with RRMS and moved on to "progressive MS" but mainly talked about SPMS, I think. I'd like to get a written transcript of this presentation, and I'm sending an e-mail to the MSAA asking if there will be one.

I'll let you know if I get a reply. I looked around to see if any information was on the Facebook page but saw no mention of it. Often Webinars are available a bit later in a transcript form.

[agate]

I had a reply from the MSAA:

Thank you for watching our first-ever live streaming event with Medscape and WebMD recently. On behalf of everyone here at MSAA, I sincerely apologize for any issues you may have had with the sound quality of Medscape’s filming of the event.

There are no plans for a transcript provided by Medscape at this time. However, until it is eventually archived on ourOnly registered and activated users can see links., Click Here To Register... website, you can watch a recording of the live event on Medscape / WebMD's page here:

Only registered and activated users can see links., Click Here To Register...

Hopefully, options such as the pause button and rewind feature prove to be helpful for your playback and repeat viewing.

[Sunshine]

Darn. I have trouble listening to tv and radio. Was hoping for transcript.

[agate]

I was too, BBS.