KD Forum

by **Greg** on Mon May 02, 2005 8:10 pm

Just checking to see if there is interest in a virtual symposium. Essentially, its a conference call (about 1 hour) featuring a guest speaker (KD doc) discussing a specific topic (TBD). Callers will be given a number to call and listen in. In the past we've done Q&A w/ questions submitted in advance. If we can figure out how to moderate questions, we may be able to do these live. Please post here if you think this interests you. Feel free to suggest topics.

by **pandreayoung** on Tue May 03, 2005 1:23 pm

Greg,

I am very interested in participating since I was not able to go to the San Diego and Chicago ones. I am interested in asking questions about long term effects of KD or any research they might be doing that I can become a part of. There are not very many of us who have had KD 20+ years ago.

by **Joe** on Wed May 11, 2005 2:04 pm

This is a great idea. Have you done something like this in the past?

by **Greg** on Thu May 12, 2005 1:12 am

Yes, we've done these before. We had a 45 min presentation about 20 parents on the line listening. There was about 15-20 min reply to questions submitted in advance. If people have a topic in mind, post here and we'll line up the appropriate doctor to speak on that topic.

by **pandreayoung** on Fri May 13, 2005 7:30 pm

Greg,

Are there doctors that are more aware of long term issues or are these doctors only aware ( or more in contact) of children who've had KD with in the last 5 years??

Paola

by **Greg** on Sat May 14, 2005 3:02 am

Hi Paola,

There are quite a few docs who have followed kids into adulthood. Most of them are cardiologists. The ones I know would be great presenters.

Greg

by **Vanessa** on Thu Aug 11, 2005 1:42 am

Id be very interested Greg especially as a support volunteer for the bridges.

by **tomsmom** on Sat Sep 17, 2005 2:12 am

Excellent idea

by **rmf16** on Fri Sep 23, 2005 5:20 am

Hi Greg,

I would be very interested in the virtual symposium. I also have questions about long term effects other than cardiac and what the percentages are for different cases. Thanks !

Rita

by **LisaA** on Mon Sep 26, 2005 9:17 pm

Hi Greg,

I too would be very interested in a virtual symposium. I've recently had additional questions and concerns, and realize the more information I have the better I'm going to feel going forward in the long term.

Please let us know when this might take place.
Thanks,

LisaA

by **Cheryn** on Sat Oct 08, 2005 6:38 am

This would be so helpful to our family.

by **lfarrellpointer** on Sun Nov 13, 2005 2:09 pm

Has this been done yet? It would be very helpful for our family.

by **Stephanie** on Tue May 23, 2006 1:57 pm

Hey, Greg,

Did this get anywhere? Just curious.

by **kct** on Mon Jun 12, 2006 10:38 pm

Excellent idea,
Would it be possible to involve a cdc/nih rep?
I need updated info on incident/rates by regions and tracking outcomes. Genetic mapping and KD would be interesting to me.
KC

by **JUNN** on Sat Jul 01, 2006 7:02 am

Greg,

that is a very a cool and neat idea! maybe in the future we can do a video too! what do you think?

KD Forum

Virtual Symposium

Virtual Symposium

much needed

Who is online