CNCF parent education day 2016


(Sam Saffron) #1

CNCF parent education day is up in a few days on Thursday, July 14th, 2016

http://www.cncfhope.org/CNCF_Parent_Education_Conference

The agenda looks very interesting!

Are any parents going?

Does anyone know if the presentations will be recorded and published online?


(Kyle Matthews) #2

Not sure on the recording, but I know @Patrick_Lacey will be there! I was going to go, but have another trip I need to leave Sunday for… timing just doesn’t work.


(Sam Saffron) #3

@KyleMatthews contacted Pat from CNCF. All the talks will be videoed, however they must clear it with the Doctors prior to publishing. Sometimes Doctors include unpublished results so they opt-out of having the talks published.

The videos will be published at http://www.cncfhope.org/CNCF_Conference_Videos (there are a bunch of really interesting talks there already!)


#4

I’m going for the first day and a half


(Corinne Eiriksson) #5

I’m there now. The talks and questions have all been informative and engaging. I really enjoyed seeing the doctors asking each other questions and discussing differing views.
I’d recommend attending to all parents but the focus has really been on HR NB.


(Sam Saffron) #6

Did any of the talks stand out? Really hoping that the talks are published, in particular I am very curious to hear what changed in the last year at MSKCC.


(Corinne Eiriksson) #7

I think Kyle posted the link but check the cncfhope.org site for the recordings later…they’re recording most, if not all talks.
I found the discussions around dinutuximab for relapsed and refractory disease interesting. We were discouraged that we couldn’t utilize that therapy for our son last year.


(Alexey) #8

Does anyone know of when the new videos from the recent CNCF will be published? I read above in this topic that the doctors should confirm that they are ok with it, but how much time it would take?


(Sam Saffron) #9

I emailed Pat last week, she said she is uploading the videos this week, but it takes a while, they should be available next week.


(Mark Shirran) #10

Sam, guess you haven’t had an update from Pat about when he’s uploading the videos?


(Sam Saffron) #11

Not yet, last I heard she was in contact with the videographers (last week). I guess there are some delays.

btw (Pat is a she, I am super duper extra sorry I made that mistake - I blame me I started it)


(Alexey) #12

Hi Sam,

Is it any way to check with Pat of when she plans to upload the videos?..
We are thinking about the next steps and really need to understand the latest figures,

Thanks!

Regards,
Alexey

@sam


(Sam Saffron) #13

I am sorry, but I think this is going to be delayed for quite a while :frowning:


(Alexey) #14

First video (from MSKCC) is available now