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Old 11-18-2008, 11:10 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default VBF Conference in NYC

There was a lot going on in one day this year! In the past I was able to come back and give an overview of the speeches, but this year I was at the registration table fittting people into all the time slots for our special sessions, ask the expert and the clinic appts. Hopefully I can find notes or it may have been recorded. I understand from others the information/presentations were excellent this year.

Conference Overview:
We saw 75 patients with 99 appointment slots (some patients saw more then one team). between 1pm and 5 pm. WOW. MSNBC was present filming the entire conference; I will let you know when it appears. They interviewed Aung Aung from the monk that came all the way from Tibet to be seen by these specialist. Dr. Greg Levitin had done his surgery (I don't know when the surgery took place), The NY Times did an article that came out in the Sunday paper. Here is the link:

I am putting together comments/feedback for improving next years conference, so if you would be willing to let me know how your reaction....especially regarding the "ask the expert", special sessions (insurance, make up, family advocates, psychology/grief counseling, clinic appts) as those are my responsibility... I'd GREATLY appreciate it. Yes, our next conference is in Irvine California and I will let you know the date as soon as it is set. Be honest.... this was the first conference I was incharge of the second half of the day (prior conferences I just helped Linda run the clinic appts) need to know how to improve and what to keep the same. One of the biggest problems I saw was starting the sessions/clinics TOO close to lunch. The doctors were very difficult to get into place.

The following list is why the conference was successful...

Dr. Marcelo Hochman was our moderator and it was the first time we had someone keep things rolling along smoothly. He did a fabulous job I was told and I so appreciate him doing this for us.

I would like to thank the following people for their help:

Dr. Hochman for leading the speakers and for leading the hemangioma team
Dr. Blei for taking time out of her very busy day to present at our conference and offer advice for a patient in Indonesia that could not come to the conference.
Dr. Darrow, for his contribution to the hemangioma team and the ask the expert panel, and for being support of parent advocacy/ support group resources
Dr. Waner for speaking, running the hemangioma team and for hosting the events
Dr. Geronemus (voted physician of the year and award was presented at the Gala) for his support, for his leadership on the PWS team. for his speech

Dr. Berenstein for hosting the events, for his support, for the wonderful food his resturant Rosa Mexicana (a must eat in NYC), for his leadership on the malformations team, for his speech
Dr. Nelson for his support, for his leadership on the pws team and the ask the expert panel, for his speech
Dr. Fay for his support, encouraging words, his contribution to the hemangioma team
Dr. Mihm for his support, for his contribution to the malformations team, to the ask the expert team, for his speech
Dr. Comi for being a leader on our syndromes team and for her speech
Dr. Rosen, for his speech, for managing to be pulled in so many directions in clinic appts, ask the expert and a few side bar special cases
Dr Levitin, for being so supportive, for his leadership on the malformations team, for his contribution to the ask the expert team.
Dr. Capentiero for his contribution to the ask the expert team, and the hemangioma clinics
Dr. Tombris for his contribution to the hemangioma team, to the ask the expert malformation team
Dr. Ortiz, for his contribution to the hemangioma team and the malformations team
Dr. Jessup for coming from Boston to be a part of our clinic teams.
Dr. Delfanian for his leadership on the syndromes team, and for walking so far to the hospital.
Dr. Tannous for her contribution to the syndomes team and for her contribution to the ask the expert panel
Dr. O for her contribution to the hemangioma team.
I also thank the Fellows and Interns that I was unable to catch names of.
Dr. Persky who let us use his office

There are a million people to thank that helped in many areas...
I would like to thank my team specifically! I could not have done it without you, so any positive feedback was because you made me look good! (especially running to the store for me Tiffany and Brian multiple times!!!)
Lisa Butera
Basia Joyce
Barbara Rothaupt
Sonja Akins
Leslie Graff
Steve and Paige Czirr
Sherri Foster
Karen Lipman
Lianne Chase
Christine Shannon
Barbara Rothaupt
Donna and Evan Ducker
Corey Tournay
Kerry Millington
Erin Miller
Debbie Birnie
Pat Beckman
Mark Metcalf
Glen and Kayla Ethington
Tiffany Ethington
Glenda Ethington
Eileen O Conner
I also have to mention 'cause they rock:
Natalie and Brian Bolinger and their team
Danielle Vlahos and her team!!!!! WOW...the kids watch was awesome....I wanted to go.
Jennie Legary for being my RIGHT and LEFT hand and my BRAIN!!!! when I had to be in two places at once
To our Netherlands reps (you have a special place in my heart), sorry about the board meeting melt down.

As you can see this was an event that came together with an overwelming amount of support without me even listing all the volunteers and the chapter reps that I did not work with. Their are a couple dozen more people that I know worked very hard to pull this off.

Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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