As you know, I am the Founding Director of the Mesothelioma Applied Research
Foundation, whose mission is to eradicate mesothelioma as a life-ending
disease. I started MARF because I believe that fighting for your legal
rights is only part of the picture. The first priority of every mesothelioma
patient and his or her loved ones is to stop the vicious mesothelioma
tumor. To do this, we need research into better treatments, we need to
educate doctors and patients on the treatments which are available, and
we need to create awareness in Washington of the horrible toll of the
disease and the need for greater federal research funding.
I am writing to update you on MARF's activities in each of these three
areas, and to share with you how you can become involved in this life-saving work.
Funding the research necessary to eradicate mesothelioma is the core of
MARF's mission. MARF has already made two excellent projects possible
through its first two research grants of $100,000 each. One is at the
University of Chicago, studying the antiangiogenesis drug,
SU5416, which specifically targets a growth factor present at higher levels in
mesothelioma than any other solid tumor. The SU5416 study, with the support
of the National Cancer Institute and MARF, is looking more and more promising.
It has caught the eye of a number of highly influential scientists and
investigators, which hopefully will lead to more research.
The other project MARF is funding, by
Dr. Joseph R. Testa at the Fox Chase Cancer Center, is examining a chromosomal site which
normally functions as a tumor suppressor, but is deleted in 75% of all
mesotheliomas. Dr. Testa is hoping to identify the actual gene in this
region, and then establish whether or not the missing or damaged DNA is
responsible for the absence of the tumor suppressing effects normally
associated with this gene. As with the tumor-suppressor gene P53 in lung
cancer, this research hopefully will lead to powerful new therapies for
the treatment of mesothelioma. Once the gene and its specific tumor-suppressing
function are identified, a way to replace the gene or duplicate its function
could then be developed.
While these projects continue, MARF is promoting additional research. Our
Review Panel, composed of mesothelioma experts from our Science Advisory
Board and Board of Directors, is currently reviewing and ranking the applications
for our second round of grants, also of $100,000 each. For this second
round, we received ten applications. This is a 50% increase over the number
of applications for the first round, and demonstrates good progress on
our goal of attracting top-quality researchers to mesothelioma.
The proposals in this second round span a range of cutting-edge, novel
mesothelioma research, both laboratory and clinical, from major cancer
research centers. They include projects to
- identify molecular markers which will enable early detection and more effective
tailoring of therapies;
- develop better tools to monitor effectiveness of treatment;
- improve the effectiveness and response rates of existing chemotherapy treatments; and
- test new drugs to prevent and/or treat mesothelioma.
We will fund the top two of these projects (to be announced shortly). As
MARF's funding grows, we will be able to accelerate the search for
a cure by making more and larger of these research grants.
In the research area, we are also developing a collaborative project among
all the MARF scientific and medical experts. As this project grows, it
will be expandable to others, and will also qualify the participating
researchers as a "group," eligible for funding for additional
mesothelioma research projects from the National Institutes of Health.
We expect this project to create more cooperation among the various mesothelioma
experts and draw additional research dollars to the disease.
In addition to fostering research, MARF is moving forward on the other
two elements of its mission. To create awareness in Washington of the
disease and the need for federal research funding, we are developing contacts
with U.S. Senators and Congressional Representatives. Most recently, on
July 31, MARF Board of Directors member
Dr. Michael Harbut testified before a Senate subcommittee on mesothelioma and other asbestos-caused
diseases. The hearing was organized by Senator Patty Murray of Washington
State and we are continuing to work with her office to push for additional
federal mesothelioma research funding. A news article on the hearing is
posted on MARF's website at
To encourage and educate patients who are battling the disease, as well
as their doctors and loved ones, we are working hard to keep the MARF
website up to date. We have recently posted a Clearinghouse of Mesothelioma
Clinical Trials, Treatment Approaches and Research Projects, which provides
information on the physicians who treat mesothelioma, the clinical trials
which are available, and the research work being conducted. We will continue
to update the Clearinghouse as we receive new information, and descriptions
from additional physicians and researchers. We also provide encouragement
and specific mesothelioma treatment information to numerous patients and
family members who contact MARF each month.
We are strengthening the MARF organization in a number of exciting ways.
First, we are forming a
Family Advocacy Board. MARF will provide the leadership and financial and administrative support
to create a platform for the people affected the most by this disease
- the mesothelioma patients and family members themselves - to organize,
be empowered and make a difference. The goal is, literally, that some
day the patients and their families will take the reins of MARF.
Second, we have added three mesothelioma experts to our Science Advisory Board.
Dr. Hedy Lee Kindler is a medical oncologist at the University of Chicago. She is also the
Chair of the Mesothelioma Program of the Cancer and Leukemia Group B,
a national clinical trials research group. Before asking her to join the
Science Advisory Board, MARF got to know Dr. Kindler well, as she is the
principal investigator on the SU5416 study described above.
Dr. Raphael Bueno is a thoracic surgeon and Assistant Professor of Surgery at Harvard Medical
School, at the Brigham and Women's Hospital, which pioneered the tri-modal
therapy for mesothelioma, and the Dana-Farber Cancer Institute. His research
has focused on molecular diagnosis and mechanisms of carcinogenesis in
malignant pleural mesothelioma.
Dr. W. Roy Smythe, Assistant Professor of Surgery at the University of Texas MD Anderson
Cancer Center, has designed a pilot protocol for malignant pleural mesothelioma
involving aggressive surgical therapy followed by intensity modulated
radiation therapy (IMRT). He is currently evaluating a number of novel
gene therapy and molecular approaches to mesothelioma treatment.
Finally, we are very privileged to announce two new members of our Board
Susan Vento is the wife of the late Congressman Bruce Vento, who passed away last
year, after a nine-month battle against mesothelioma. Mrs. Vento will
help us draw political attention to the disease and the need for research
funding. Her personal experience makes her a powerful voice and representative
for other patients and families. Also, her talent and years of experience
as a union organizer (school teachers) will be of great help in organizing,
motivating and empowering the Family Advocacy Board.
Mouzetta ZumwaltWeathers is the daughter of American hero and Chief Naval Officer Admiral Elmo
R. Zumwalt, Jr., who died from mesothelioma one day after greeting the
new century. Mrs. ZumwaltWeathers and her family convinced the government
to provide medical coverage for veterans suffering from Agent-Orange related
diseases, and she shares the benefit of this political experience with
MARF. She also has extensive career experience with drug-development companies.
For all of the reasons described above, I am thrilled about MARF's
potential to eradicate mesothelioma. We have vision and energy, and we
are becoming a powerful force in fostering research, raising awareness,
and finding a cure for the disease. You can get involved in this effort
in a number of ways. You can make sure your doctor has submitted his or
her information to the MARF Clearinghouse. You can join the local chapter
of MARF's Family Advocacy Board, and join in our education and political
Using this form, you can designate a percentage of any recovery you obtain
through your legal claim to be contributed directly to MARF in your name.
Your legal costs, as well as the attorney's fee, will be based on
and deducted from the balance or net. Thus, in effect I will partner with
you in the contribution. For example, if you were to designate 2% of your
recovery to be contributed to MARF, then 2% of the attorney's fee
I would have otherwise earned will also go to MARF. Other clients have
waited until the resolution of their lawsuit at which time they have donated
a lump sum amount. In either event, the donations are tax deductible.
Without any out-of-pocket cost, you can play a major role in helping MARF
accomplish its life-saving mission. Feel free to print out a copy of the
Addendum, or you can contact my office and we will promptly send you a copy.
Several of my clients have contributed to MARF (I would be pleased to give
you their names and phone numbers). In fact, my law firm and my clients
have funded the bulk of MARF's budget. We have asked other law firms
to contribute an amount commensurate with their wealth, knowledge and
compassion, but so far the response has been disappointing. If we are
going to find a cure, I believe it will be the result of the efforts of
patients and their families. Please note that my representation of you
will not be affected in any way whatsoever whether you decide to donate
or not. I am providing this mechanism because many of my clients have
asked me how they can help fund the finding of a cure. This is the best way.
I encourage you to consider joining me in MARF's mission by becoming
involved in MARF in this way. Please feel free to call me directly, or
contact MARF's Executive Director, Chris Hahn (805.560.8942, firstname.lastname@example.org)
to obtain further information about MARF or discuss how you would like
to get involved.
Roger G. Worthington