A word about the value of conferences
- If there are any of you who have been reluctant to attend a brain tumor
patient conference, I want to reiterate the importance and the "gifts" of
attendance. It is far more than a lecture series about the topic. It is a
place that feels like home where, at least for myself, I feel more accepted
and at ease with myself than just about anywhere I could possibly go.
But my ability to express this in words pales in comparison to two emails
sent to T.H.E. BRAIN TRUST board members and the BRAINTMR list, as well.
For those of you who do not know George Hunter, the man who sent most of the
annual fundraiser appeal letters over the past few months, he lost his
precious daughter, Stacia, to a glioblastoma in May of 1999. He continues
to be part of the brain tumor community through his efforts and affections.
What he wrote about the value of a conference is so beautiful, I just had to
post it. Here are his reflections about the Tampa conference and the people
he met and revisited:
Where do you begin to describe the Woodstock of Brain Tumors??
Well, I'll start here.....I went to the conference to be with my people, be
with my tribe, be with my brethren. They are the brain tumor people and
their aint no better tribe in the world.
They (you) are my extended family.
"Wanna take a ride?" (Said the Dr to Jody Foster - Contact!)
The conference is outlined around activities and workshops that are meant to
provide information and the sharing of hope. Every time I go to a
conference, I come home saying to myself.....
that was so goooood.....so real. How good? When I reach the end of my life
and sit back to think about the special times of my life, the unforgettable
moments......the brain tumor conferences will all stand out with the best of
my other life experiences.
Right up there with catching Princess.
It's all about the people and the creation of love, right in front of your
eyes. Life is hardly ever this real. All about the people:
Sheryl Shetsky (Diva) - 16 year survivor, this woman is a tireless beacon of
hope and energy, she is the living force behind the Florida conferences
along with our gracious Naomi Berkowitz from ABTA.
Samantha Scolamiero - 14 year survivor, founder of the List(s), my personal
hero who is also a tireless voice for learning, understanding, support and
change. She is also an extraordinary slam-poet who can drop your jaw with a
poem right out of her head.
Matthew Fullerton - 18 year survivor of his gbm, who comes off a little on
the gruff side sometimes, but mostly just makes you laugh your butt off the
rest.....Matt more than anything else.....is real.
And a Teddy Bear. A natural. My buddy.
David Bailey - 9 year survivor, our voice in song and hope and a man I am
very fortunate to call my friend.
One of the things about David that is becoming more apparent all the time is
his story-telling in between his songs as well as during his songs.....his
TRULY deep understanding of life, the need to put perspective into our lives
and hearts.....and remember to laugh.
The comic in David is not heralded or recognized as much as the
songwriter.....but, folks, David doesn't just make people cry....
he makes them laugh.....laugh at him and themselves in the process......all
his CD's out are good....12 of them now.....
they are all good. If you have not bought any yet, get on-line at
cdbaby.com and get some joy and hope.
Most importantly, check his tour schedule
(http://www.davidmbailey.com <http://www.davidmbailey.com/> ) and GET OUT TO
SEE HIM LIVE! Am I plugging David? You bet your ass I am.
David Bailey is a NATIONAL treasure, a world treasure.
Trisha Williams - 7 yr survivor, another force for good in the braintrust
organization and now a new friend I am proud to have met......she is full of
life and energy and made my daughter a necklace with her sister Stacia's
birth stone in it.
Nancy Conn Levin - 10 yr survivor, my old friend who I have now worked with
on the Brain Trust for years.
She and her husband are always so fun to be around.
Nancy has helped make the meningioma list one of our most productive support
groups, and has done the same with helping us to drive the future of all.
April Bradick - social services staffer at headquarters, HI APRIL!! who I
just met for the first time. Smart, energetic and also working to build our
community and services.
Bruce Blount - 14 yr survivor, captain of the adult ependymoma list and a
totally cool guy. First time I met Bruce. He is kind of a quiet guy, the
kind when he speaks, everyone listens.
Bruce exudes internal happiness. He is at peace with the forces inside and
around him. Great guy.
Dona Ross - 10+ yr survivor of an abult brain stem glioma, Dona is the
epitome of what I as a West Coaster think of as a beautiful Southern Belle.
Dona has the warmth and charm that is so rare and hard to find these days.
Dona is so cool. Peace.
Cindi Rixey - 8 yr survivor, I just call her Rix :)......she is another
intelligent, beautiful, strong and gentle woman who has tirelessly worked to
learn, share and advocate for us!!! Getting a hug (or 2 or 3 or 4) is a
must at the conference.
Kristina McAlvanah - the leader of BTAN and Hidden Under our Hats. I call
her my little sister, but it could just easily be Big Sister.....we have
cried a lot of tears over the years..... Kris is smart, funny, real,
beautiful, and dedicated to making a difference. Kris is real. Her son
Brian (sp?) is awesome, destined to make a mark in the world.
Murray Sheppard and Lori - like Kris, Murray lost his loving spouse to a
tumor some years back, we call him Shep. Shep is like my East Coast
brother, or thats how I feel anyway. He is laid back, a major force for
good in our community, a total blast to be around......and someone who would
give the shirt off his back to help anyone in need. If his shirt is on,
We love you Shep.
Lanette McLamb-Veres - 7 yr survivor, Lanette is another bundle of joy
always looking to light up the day and ALWAYS make a difference and make it
She has more ideas about Fortune Cookies than I got fishing lures in my
tackle box. To be in her company is to be in the light.
Barb & Bob Gibbs, Bob a new survivor and their child now a
survivor.......soon the whole country is going to know Barb and Bob....but I
know "them" now and they are such a great couple, they got their boxing
gloves on, but they are also LIVING TODAY.
What a pleasure it is to meet the new people every conference.
Speaking of which.....
Linda and Lisa Magiera - the mother of sister of Lori, who they recently
lost to her gbm.....I sat with them off and on the whole conference, and the
more we talked and shared, the more we saw our daughters and our families
had so many of the same experiences.....validating our losses to each other,
and knowing how great our kids were to us and how much we love them.
Amy Carter - the mother of Nicholas, a true mom doing her very darn best to
understand and get the best treatment for her child. Nicholas is our very
own of Nicholas's Nickels and one of the young heroes at St Jude's. Amy is
unassuming, real and an asset to the world by her example of love and
John Martin - a 37 yr SURVIVOR, who walked into the braintrust conference
party 3 years ago on his birthday, together with his mom in Chicago and came
on down to rejoin his brethren, break bread and find out how he could help
make a difference. His charm and balance alone make a difference. A Good
I could go on forever.......Mike, Jody, James, Scott, Sarah from NBTF,
Cathy, Karen and hundreds more.....for anyone I forgot, I apologize........
Why did I go to Tampa, why do I go to conferences all
these many years after Stacia has died? To be with
the people, my people.
No one understands life better than us, our community.....and when I'm
sitting up on Shasta in a couple months, waiting for a salmon to bite or a
snowy owl to fly over.....I'll be thinking about how great it was to be in
the company of so many heroes.
Love you guys
(f/o Stacia, 1972-1999)
San Jose, Ca
If you'd like to read more of his comments, he continued in a second email:
Already I have thought of two people I left off and really want to say how
sweet it was to meet.....
Kim Crane - another extraordinary survivor, her nickname is Kim Cranium,
which is even cooler. Kim, I was really impressed by your sweet personality
and generous spirit. All that you have done to survive, all that everyone
has done to survive....and yet you are so gentle and so tough!!!!! Another
Catherine Jeffries - putting another name to a face and personality,
Catherine is simply remarkable. She is intelligent, determined, thoughtful,
beautiful (everyone is beautiful) and full of great ideas and hope.
So, what was it like, this conference? What did we do that was so special?
The best description I could come up with is think of a family reunion that
only the people you loved and liked attended. Think of a reunion that saw
scores of new family members joining it every year. And some who we had to
Give back to our Creator, but who are always remembered in our midst forever
We ate breakfast, lunch and dinner together. We partied every chance we
got. One moment you were with one group of people, the next you had morphed
into another group. We told our stories and we all listened. We cried. We
laughed. We went to workshops that we needed to. We went to the survivors
panel and listened to the newcomers ask David, Matt and Sheryl every
question they could think of. We felt and saw the hope grow in every face.
At once the most serious of workshops you could imagine, and then the hope
just grew and grew until there were nothing but smiles and wonder everywhere
We got tired, took some naps. We slept and got back up. We know who is the
life of the party. It is each and every one!!
You da man! Oh no, you da man! No, you da man! I am....nah, you da
man!!!!!! And so it went.
We laughed and laughed.....ahhh man, it felt so good.
We got to see two David Bailey concerts!! And man, that was the absolute
best......he is da man. :) Ha! One moment you were laughing, another you
were crying. But in between it all David had a dialogue with everyone that
flowed from song to song....
there are things we can control you see, and many we cannot....
airports where you are welcomed and others where you are shot.
We also did two vigils. our first, of course was for healing...
for survivors and their caregivers, may God bless each and every one. We
formed a circle and read our prayers and spoke the names of each and every
person we could think of.
We also did a remebrance vigil, later Saturday night.
We read the Angel's List from 2005 that Diane Phillips (List Angel!!)
brought to Tampa on your behalf. Diane is another one of those angels that
you can always count on in this life. I remember when she called me after
my transplant to see if I was alive :) And when we were done with this
year's angels we went around and called out every angel we could think of,
and spoke them loudly in the night......I shared "Kristin's Gift" and then I
broke down and cried with my friends all in my sight.
Last, but not least, on Sunday I went to the hats display and found all the
hats of my dear friends children. And in my final hour at the conference,
Kris gave me Stacia's hat to hold.....
and I smelled her once again......after all this time......
I could still smell her, faintly......she will always be my hope.
It was a precious time again, time to cry. But my friends were there to
catch me if I fell......thats what love is all about.
(f/o Stacia, 1972-1999)
San Jose, Ca
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