|
Click on the image for larger view
MARF has come a long way in a few short years. We've quadrupled our staff from one to four.
We've quintupled the number of
grants we've awarded from two to
ten. We've increased the number
of our donors from a few dozen to several hundred.
We've even got the blue
wristbands. But , alas, we don't
have a race for a cure. And I will not rest until we do.
MARF is like a Swiss watch. There's many parts working together, each
essential.. Tonight I want to introduce to you a few key
players on MARF's team, plus a
few others who may not wear MARF's uniform but they fight our fight.
Disclaimer: If those of you mentioned are offended, don't
worry, "what plays in Vegas stays in Vegas." If you
are not mentioned, consider yourself lucky.
|
|
|
|
|
Click on the image for larger view
Our mission to eradicate mesothelioma wouldn't be
legitimate if we didn't have our
own Czar. Last year I nominated Dr. Harvey Pass. The good
news is that nobody objected. The bad news is nobody voted at
all. So tonight I'm just going to
use my authority as founding director and appoint Dr. Pass to
the post.
Why Dr. Pass? Is it because he's
a master surgeon? A pioneer in the search for mesothelioma
biomarkers? A prolific author of articles and textbooks? A
gifted speaker who's been around
the world lecturing on mesothelioma medicine? Is it because
he despises medical "nihilism" and abhors knowledge
hoarding "isolated fiefdoms?" Is it because
he's advocated for mesothelioma
research funding at press conferences on Capitol Hill? No.
MARF exists to help mesothelioma patients and their families.
You cant help them if you don't
talk to them. Pass is our Czar essentially because
he's the first doctor since Dr.
Marcus Welby to actually return his patient's phone calls.
|
|
|
|
|
 
Click on the image for larger view
A czar can't win a war by
himself. He needs a army of dedicated officers and foot
soldiers. Chris Hahn is on the front line everyday.
He's in the trenches, educating
patients, networking with doctors, monitoring the progress of
our grants, and raising funds.
You know Chris as the infinitely patient, warm hearted and
cordial executive director of MARF. But I know Chris as
"Genghis Hahn" a nom de guerre he earned when he
was a national champion bike racer. Off the bike, a boy
scout. On the bike, a holy terror.
As you can see, come crunch time, when the margin between
victory and defeat is razor thin, and danger is all around,
you can always rely on Chris to do whatever's necessary. ...he could go * all * the*
way.... Crash!
Since he's retired from
hurly-burly, bar-banging field sprints, he's mellowed. But, to be sure, don't sneak
up on him while he's eating.
|
|
|
|
|
Click on the image for larger view
Joining Genghis on the front lines is another seasoned
warrior. Col. Jim Zumwalt is a modern day Odysseus, who by
day can sleigh a battalion of dragons but by night can play
the lute so sweetly he can bring tears to your eyes. Jim
knows all about service, having been a marine for most of his
life.
He also knows about sacrifice, having lost his brother to
Agent Orange leukemia and his father, Admiral Elmo Zumwalt,
to meso. Col. Zumwalt has long advocated that the government
accept its duty to fund mesothelioma research. And the
Zumwalt family was the first family to my knowledge to use
their private tort claim to persuade a former asbestos
manufacturer to donate to MARF.
I'd share a fox hole with this
soldier any day.
|
|
|
|
|
Our next big shooter does not flinch in the face of fear.
Hails from the mean streets of Chicago. Recently transplanted
to the bright, blinking lights of Las Vegas. He enjoys opera,
a dusty bottle of Amaroni, and Italian art. He's never met a tumor he didn't want to
obliterate, the Godfather of Meso Oncology, our very own
'' Dr. Nick "the Heater" Vogelzang.
|
|
|
|
|
Click on the image for larger view
Generals can't win a war without
foot soldiers and Marf has some of the best. You've heard the phrase "killing with
kindness?" Well if that's
true this next soldier is positively lethal. He's a 4 year survivor. He writes a journal
about his journey that is read by thousands across the globe.
He is a fountain of encouragement. He's an ombudsman, a sci-fi author, a submarine
warfare wonk, a pastry chef, a quick study with a quick wit,
a lover of small animals....he is, our very own Director of
Communications-- Mr. Klaus Brauch.
Mark Twain once said "No army can withstand the assault
of laughter." That may be true. But for Klaus,
mesothelioma is hardly a laughing matter. Yes, he uses
laughter to cope with his chronic illness, but he'd be the first to use a flamethrower on his
unwanted guest if he had the chance. Klaus has dedicated his
life to MARF's mission-- to
eradicate mesothelioma as a life-ending disease -- (in his
words) "as if his life depended on it." And we
thank him.
|
|
|
|
|
Click on the image for larger view
We all know that when one spouse gets sick the other feels
the pain. The old saying is hell hath no fury like a woman
scorned, and this pretty much sums up the spirit of Julie
Williams. When her husband, a medical doctor, was diagnosed,
their bond became stronger ( as you all know).
They've been to DC a few times to
advocate for research, and Dr. Williams was instrumental in
building an alliance of patients and doctors to educate
Congress about the extraordinary financial hardships faced by
patients who wished to purse expensive multi-modal
treatments. Julie would like to get angry, but she knows you
catch more flies with honey than vinegar. For the most part,
she's as sweet as a peach, but
when push comes to shove, she's
tough as a combat boot.
As Julie says, "Brett speaks softly, but I'm the big stick." Together,
they're a powerful force. And
we're all better for it.
|
|
|
|
|
Click on the image for larger view
We know that too often a great idea advanced by good people
doesn't always succeed. Sometimes
it takes a hammer. This next foot-soldier, Paul Zygielbaum,
doesn't belong to a famous family. But, like the
Zumwalts, he wasn't satisfied with simply resolving his
own injury claim, knowing that the public mesothelioma
epidemic would still rage on. Paul put his foot down. He
refused to settle his legal claim until the defendant matched
their settlement offer with a donation in the
same amount to medical research.
The company relented and did the right thing. This is an
anecdote that I hope can serve as a model for using the
civil justice system to both compensate
injured individuals and resolve the larger,
public health crisis.
|
|
|
|
|
Click on the image for larger view
-- incidentally, Paul and his wife just returned from a trip
to Ireland, where he reports that he tolerated the chemo
surrogate favored by the locals quite well.
|
|
|
|
|
Click on the image for larger view
Speaking of raising money, it's a
fact that sex does sell, and MARF has its own stable of
beauty queens. These two lovely ladies, Nancy and Alice, each
lost the love of their life, but they never
lost their love for life, nor their
unshakeable commitment to helping others. Together, they have
organized dance-a-thons to help raise awareness and precious
dollars for mesothelioma research.
They are currently holding auditions for the Radio City
Marfettes, which I'm told will
perform for us at next year's
conference. Please apply.
|
|
|
|
|
Click on the image for larger view
Whatever it takes. By the way, tonight when
you hit the town, if you see this lovely lady, Sandy Hazen,
later on the Strip, don't forget
to tip handsomely. All proceeds go to MARF.
|
|
|
|
|
Click on the image for larger view
Every day we find new recruits who want badly to get into the
game, to do their part in improving the lives of all
mesothelioma patients. This next die hard, Bob Bulldog
Treggett, another "one lung wonder," flew down from
Seattle to a fundraiser in Los Angeles. Not only did he give
a very large donation to MARF, he practically begged me for
an assignment. "Put me in Coach, I want to be
MARF's poster boy, I'll talk, I'll
write letters, I'll do whatever
it takes, just put me in!" It would be easy for
mesothelioma patients to sit on the bench. But we are blessed
to have the privilege to work with patients like Bob who are
eager to flex their muscle. And you do have power, Our goal
at MARF is to help you exercise that power.
|
|
|
|
|
Click on the image for larger view
As Jordan Zevon knows, MARF's
mission attracts unlikely champions. Most of us had never
even heard the word before a loved one was diagnosed.
Remember last year the stirring performance Jordan gave, made
all the more poignant because his violinist had just recently
lost her husband to meso. MARF held a fundraiser concert
recently, and the headliner, Chris Botti, admitted he had
never heard of mesothelioma before we asked him to play. But
it turns out, Botti's drummer,
Billy Kilson, who played that night like he was on fire, came
up to me after the show and said: "I didnt even know
what the gig was about until I heard you mention
"mesothelioma" --that's
what my mom just died from." She was a school teacher.
Billy offered to help us in any way he could.
That's another reminder that
mesothelioma can strike just about anywhere, at anytime, in
anybody.
BTW: one look at Chris Botti, and I know why women
can't stand to see Charlize
Theron, Eliz Hurley or Catherine Zeta Jones. I'll never look like that.
|
|
|
|
|
Click on the image for larger view
Money, charm, muscle, sex appeal and passion are still not
enough, we've learned, when it
comes to winning the war against meso. We need boots on the
ground in the corridors of power on Capitol Hill.
This year history was made when a US marine named Billy
Speicher testified before the US Senate. He said that our
federal government had a moral duty to fund research for
mesothelioma treatments. Billy noted that about 1/3 of mesos
dxd in this country proudly served their country. Billy was
tired of being stonewalled, placated and ignored. He stood up
for all of us when he demanded the truth.
Sen. Specter sort of agreed with Billy that the feds do have
a major role to play in curing this disease. He agreed to
look into what the NCI was doing to help advance mesothelioma
research. But I'm not so sure
that Sen. Specter could handle the truth.
|
|
|
|
|
Click on the image for larger view
Why do I say that? Well, about that time MARF retained its
own activists in Washington DC. MARF has always championed
the need for a line item appropriation for an independent
mesothelioma research and treatment program. During the mark
up of the FAIR act, we were approached by Sen Herb Kohl, who
saw and liked MARF's proposal.
Sen. Kohl added MARF's research
program to the FAIR act, a program which would fund 10
treatment and research centers, a tissue bank, a clinical
database, and other essentials, in the amount of $29 million
per year. A little over half of that was to be paid by
industry, and the feds would pay about $12 million into the
program.
Our two sleuths, Mary Beth and Jennie, did some digging. They
discovered that Sen. Specter had never pulled the strings
necessary to appropriate the government's share. It was in fact an unfunded mandate.
A trick designed to garner the mesothelioma
community's support for the bill
|
|
|
|
|
Click on the image for larger view
Jennie and Mary Beth have been following the money. They have
found a few senators who endorse MARF's mission. And these senators want to help.
But they are pragmatic. I wish I could report that Sen.
Specter, who is chairman of the committee that appropriates
funds to the National Institute of Health, has found new
money for the creation of a mesothelioma
treatment program. But I can't. Between two costly wars, two hurricane
clean ups, and a mounting deficit, the feds right now are
looking for ways to cut existing social and
medical programs. They simply are not in the mood to fund new
cancer research programs, no matter how worthy.
The Good news is that because of MARF's pressure, SPecter did agree to earmark $1M
to NIOSH for the funding of a mesothelioma database/registry
through the CDC. Not much, but a start.
|
|
|
|
|
Click on the image for larger view So to prevail in this war
against meso, we need to win the hearts and minds of the
naysayers, the institutional forces of apathy and neglect. To
do that, we need a voice, a voice of compassion and reason, a
voice that commands the attention of those not paying
attention. In fact we need the clear voice of a former school
teacher.
Thankfully, we found that voice, belonging to MARFs very own
Susan Vento, who like her protégé, Dr. Laura, has
been on the airwaves the last few months spreading the good
word, raising awareness, and scolding the doom and gloomers.
|
|
|
|
|
Click on the image for larger view
With all the hollering and hullaballo, it's tempting to engage in every fight, join
every crusade. Fortunately, we have somebody to keep MARF on
the straight and narrow. This doctor has a keen ear for
balderdash and a fine filter for fiddlesticks.
For the past 5 years, this rock of a man has thankfully shot
down every admittedly hair-brained notion I've ever floated by MARF's directors. His name is Dr. Robert Taub.
I've learned never to go into a
meeting with this bull moose without having all of my facts
triple checked and cross referenced.
|
|
|
|
|
Click on the image for larger view
MARF is focused on eradicating mesothelioma but we are
mindful that there are other diseases associated with
asbestos. For years, mesothelioma has thought to be
incurable, but so has asbestosis. Dr. Mike Harbut, one of our
directors, agrees that mesothelioma research should be a
priority. But he has been arguing for years that asbestosis
can be treated too, if we only had the budget and the will.
Industry, Congress, even trial lawyers have recieved his
message about as warmly as the Roman Inquisition heard
Galileo's theory that the earth
moved around the sun.
I want to give Dr. Harbut a special "Dont let the bastards grind you down!"
tribute for his courage and faith. And for the wonderful work
he's doing in Libby, Montana. One
day we hope that the Flat Earthers will open their ears, and
their wallets, and fund research for mesothelioma and
all asbestos-related diseases.
|
|
|
|
|
Click on the image for larger view
Nobody represents MARF's can-do
spirit better than our co-founder, Dr. Robert Cameron.
He's in the trenches 24-7. In
fact I should be thanking his wife and kids. He's teaching residents, he's operating in a way that spares the lung,
he's researching ways to bolster
the body's own immune system to
fight meso, he's developed a
user-friendly clinical database, and he was the principal
architect of MARF's legislative
agenda.
His patients have donated hundreds of thousands of dollars to
MARF, a testament to Dr. Cameron's leadership. When we need answers,
he's the go to guy. He does the
heavy lifting. In my mind, he's
The Fixer. Unafraid to do whatever's in the patient's best interest.
|
|
|
|
|
Click on the image for larger view
He's also unafraid of getting his
pants sued off by trial lawyers. He's probably the only surgeon in the world
who's so comfortable with his
skills that he doesn't mind too much getting the third
degree by someone like me while he's got his hands in his patient's chest cavity. That's confidence. Not to mention concentration.
|
|
|
|
|
Click on the image for larger view
The final slide is a tribute to my personal hero.
At MARF, we've always said that
persons should give commensurate with their wealth, knowledge
and compassion.
This next person is not a fortune 500 company. She
doesn't have a market cap. She
does not own islands, speedboats, private jets, or a sky box
at the football stadium. She lives on a fixed income. She had
never heard of mesothelioma until her husband, an
electrician, got diagnosed in 1999. Then she learned very
quickly that mesothelioma is an ugly cancer that needs to go.
No, she's not wealthy, but she
has a heart of gold. She's my
inspiration. I am proud to present to you, the Patron Saint
of MARF, a widow who so believed in helping others before
helping herself that she donated her entire legal recovery to
MARF. My friend and idol, Barbara Hoffacker.
|
|
