Please be on the lookout for The Brain Tumor Society's Nov/Dec Heads Up Newsletter which will have a write-up about the Conference. If you are not on the mailing list for the newsletter please see the "Contact Information" page.
Dear Group, we want to share the messages we (the group) has received over the last couple of days. These first three are from people on BRAINTMR, and then there are several from individuals. A BIG THANK YOU to all the members of the group who helped make the conference a success. Stan & Virginia
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Those of us who can't attend will be with you in spirit! What a wonderful time you
all will have. It's hard to explain to others that attending a brain tumor conference can
be fun as well as informative.
with love to all attendees,
Peace, joy, friendship, hope and healing,
Cindi 53, meningioma - right cavernous sinus
encasing carotid artery, diagnosed 11/2/99, gamma knife Rocky Mountain Gamma Knife Center
12/28/99, stable MRI 6/12/01, neurosurgeon J. Adair Prall, MD, Denver, CO
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Date: Sun, 28 Oct 2001 14:18:37 -0800
From: Louis Scaperotto
Subject: NJ Brain Tumor Conference GREAT!
My wife, Mary Beth and I enjoyed the NJ conference very much. Thank you to everyone
who made it possible! Everything was perfect: speakers, location, parking, food etc.....
We enjoyed meeting Al, Rebecca and so many on the list.
Thanks again. Lou
Thanks Stan for finding a place for my wife to rest for a while during the
conference.
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Date: Sun, 28 Oct 2001 17:33:07 EST
From: Ilene Lewis
Subject: NJ Brain Tumor Conference
Hi everyone,
My husband Dave and I also felt the conference this weekend was absolutely wonderful. Our
thanks to the incredible job Stan, Virginia, Patty and all the others did to make this
event such a success.
This was our first conference and we took away from it so much information and so many
contacts. To meet the faces behind the screen names was a big kick !!!!
Thank you again for this wonderful event.
Regards, Ilene and Dave Lewis
Dave dx 12/97 ependymoma - doing great !
Date: Sun, 28 Oct 2001 18:38:59 -0400
From: "Al Musella, DPM"
Subject: Re: NJ Brain Tumor Conference GREAT!
I also enjoyed it.. it was one of the best. Best part was meeting people who I have
never seen before, but felt as if I knew them forever. I am usually uncomfortable at
social events - my wife says I am the most anti-social person she knows, but felt great
there.
I just wanted to clarify something negative that was said about my website by one of the
lecturers... the neuro-oncologist said he searched my site and found some old trials from
a few years ago that were already closed.
The reason for that is that I request the doctors to update the information themselves (or
let their residents or nurses do it), and some of them are "too busy" to do it -
they put it off and it never gets done. I send them reminders twice a year, and some of
them just don't get to it. My thoughts, and I could be wrong.. let me know OFF LIST what
your thoughts are on this matter, are that if I just delete them, the doctors contact
information is gone also. One of my main concepts is that the actual trial is not as
important as picking a brain tumor treatment team that has experience treating brain
tumors. By leaving the trial there, patients can call the doctors, and ask about the
trial. They will
find out that particular trial is closed, but when they do, hopefully they will be offered
information on the current trials. (If you call a doctor who is listed and the trial is
closed, tell them to update it on virtualtrials.com!)
The trials are listed by the date they were last updated. No matter how you browse the
listings, by tumor type, by geographic area, by type of treatment, by keyword search,
advanced search, etc, the most recently updated listings are displayed first, and I
specifically state the date the trial was last updated.
Al Musella, DPM
Musella Foundation
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Date: Sun, 28 Oct 2001 19:45:14 -0500
From: Cynthia Baumann
Subject: MRI Time
hello friends...well, i just returned from the NJ BT Conference, and i shall put
together
some info for another post...however, right now, i am tired....very long drive....
kevin is havin an mri tomorrow, and i ask that you please pray that he continues to have
clean scans...once again the mri jitters are here, and this is his first mri since
treatment ended in july... he is casually saying...oh yeah,,,,,mri...i am saying...OMG
mri...
godspeed
Cindy mom of kevin oligo/astro lll dx.
7/2000 pcv/rad/clear MRI MGH Boston, MA
Courage doesn't always roar.. Sometimes courage is the little
voice at the end of the day that says I"ll TRY AGAIN TOMORROW
Here are some comments sent directly to us regarding the conference.
From NJ: Hi Stan, The Conference was so wonderful today. I am all fired up with 'Hope' again for my son. I told him all about it and he is considering going to one of your meetings. Maybe we can get there in Dec or Jan. This Thurs I have to go to Hyannis, Mass. for my job , so there goes another meeting date. It was nice to meet you too. Thank you for a wonderful day filled with terrific people who want nothing else, but to be of help to others. Please keep me on your e-mail list about the meeting. Sincerely, Phyllis Annett From Connecticut:
From NJ (Lois Mishkin from our group):
You did a terrific job. I wish that this conference had been available when Lew first
became ill. I know that it was invaluable to everyone there. As for me, I did find it
difficult at times but was glad that I was there. You deserve a pat on the back! Hooray
for you!! Lois
From PA:
Stan and Virginia, Hello to you both! I just cracked open your mail on the responses to the conference this weekend. Wow! It reads like you guys really did a fantastic job! (As if I expected anything other than...). You should be very proud of yourselves as you guys are some of the most driven people I've ever met. We are very sorry that we missed it, as Baby Rohauer is due in a few short weeks (23 Nov). Michelle is doing great. She has the typical swelling of the feet and is doing a most commendable job with the fatigue and just overall addition of the big tummy. We are anxious as the last few months have been a flurry of prep work, however, we feel we're as ready as we'll ever be, so, I will definitely keep you guys posted. Congratulations, again, on a very well planned and executed conference! All our love to everyone. Robert and Michelle Rohauer