Mary Hesdorffer, NP with Laurie Kazan-Allen, Dan Sterman, MD, and Jim Sheridan in front of the UK Parliament.
Meso Foundation’s executive director, Mary Hesdorffer, Nurse Practitioner, is in London and wanted to share with you that she just spoke at the annual asbestos seminar of the All Party Parliamentary Group on Occupational Safety and Health in the House of Commons. Her talk entitled, Mobilizing for a Mesothelioma Cure, stresses how funding research is the key to eliminating mesothelioma.
“I am thrilled to be able to represent the Meso Foundation and the role that it has in funding the most promising peer-reviewed research from around the globe,” said Mary. The Meso Foundation has funded researchers in the United Kingdom and six other countries because we believe that it is necessary to collaborate in order to find a cure for mesothelioma.
Personalized medicine is the ability to select a biologic target and direct therapy against this target. It is associated with improved outcomes in a number of tumor types. The most startling was the development of Gleevec which targets CKit in gastrointestinal stromal tumors. The field has since grown by leaps and bounds. We are making progress in mesothelioma, too.
An example of what I’m talking about is displayed in the presentation made by one of our grant recipients, Liang-Chuan (Steve) Wang, Ph.D., at our International Symposium on Malignant Mesothelioma.
In his presentation of his Foundation-funded grant, Dr. Wang and his colleagues at UPenn identified a gene that may be responsible for chemotherapy resistance in mesothelioma patients to Pemetrexed (Alimta) and cisplatin. As per Dr. Wang, this may identify a group of patients who may need higher doses or longer duration of therapy or perhaps should be encouraged to try new drugs. This is step one and Dr. Wang has assured us that he will continue to work on the concept and in the future hopes that it will lead to a clinical trial.
Another example is the work currently underway to exploit mesothelin as a target and way into the malignant cell. Many of you have met patients at our symposium who have benefited from some of these trials and I remain excited and committed to stewarding patients through the clinical trials system to ensure that they know of all opportunities to participate in cutting edge research. Please take a moment to visit the research section on our website to see how the Meso Foundation has funded grants that have laid the groundwork upon which much of what you read about in mesothelioma news has been built upon.
To further advance our ability to get to the point of personalized medicine the Foundation will continue to foster communication among clinician, basic scientists, pathologists and members of biotech and pharmaceutical companies to disseminate information, as well as fund the work that will take us to the next level. Early on, we partnered with Dr. Mike Becich to ensure that the Mesothelioma Virtual Tissue Bank became a reality and we are proud to say that our efforts have paid off. Mesothelioma researchers now have access to mesothelioma tissue to conduct their experiments and further their scientific endeavors.
A major investigation appearing on the front page of Monday’s Wall Street
Journal looks into fraudulent asbestos claims and the multi-billion dollar
mesothelioma litigation industry. (You can read an abstract of the article
http://online.wsj.com/article/SB10001424127887323864304578318611662911912.html?mod=WSJ_hps_MIDDLENexttoWhatsNewsTop. Full access requires a subscription.)
As a science-based organization and the largest independent source of
nonprofit funding for mesothelioma research, we do not advise on legal
issues. Nor do we provide referrals. As a foundation we firmly believe in
full adherence to ethical guidelines when addressing the impact of
mesothelioma. Our mission is based solely on putting patients first, and
mobilizing as many resources as possible to fund independent, peer-reviewed
Asbestos liability is very complex and difficult to decipher, and it has
skewed the public’s understanding of mesothelioma, which impacts thousands
of individuals, regardless of age or background. But, just as we saw at
our annual symposium, there are new victories in the field of mesothelioma
- both in the labs and the clinics – that give us a lot to hope for. We
are finally very close to seeing treatments based upon a personalized
medicine approach having identified unique targets and genetic
alterations. I have never seen this much excitement among the medical
professionals who have dedicated their careers to finding a cure for
And while the economic, legal and political aspects of asbestos have never
received national attention like this before, it is our hope that the
national spotlight on this issue will help us lead to finding a truly
effective life-prolonging treatment for mesothelioma patients, and a cure
for this aggressive and neglected cancer. This important article, which
comes on the heels of our annual gathering, gives us a renewed sense of
hope and purpose.
The Meso Foundation realizes that there are numerous groups that you can affiliate with, provide your stories and attempt to raise awareness but it seems as if many are just going about this in the wrong way. To begin with, have you really looked into the Facebook pages or websites that you are supporting? Are they transparent in who they truly represent? Most often this is not the case.
The Foundation is your only 501(c)3 not-for-profit that is dedicated solely to finding a cure for mesothelioma. Our executive director and nurse practitioner, Mary Hesdorffer, is uniquely qualified to assist you in managing your disease and understanding all of the options that are available, be it a clinical trial or a more standard form of treatment. Mary spent years actively treating mesothelioma patients and writing clinical trials and papers that have been published in peer-reviewed journals. She understands the disease and brings a unique perspective to the Foundation both as a medical professional and patient advocate.
Patient advocate is a term that is widely used in mesothelioma, but who are these advocates? Who do they work for and what motivates them to advise you? Many nurses have been hired by legal entities but do you know that they have never worked in a mesothelioma clinic, and are trained in this disease by the law firm that surreptitiously pays their salary?
Hmmm… seems that we have some serious conflicts in this disease and it is about time that everyone takes a step back and thinks about what is truly best for the patient and the disease in general.
As the Meso Foundation is not a business model, we are not beholden to any institution or legal entity. We are independent and trustworthy which sets us apart from many of the “faces” you encounter on the web. Facebook is new to many of you and we ask that you think before you click the “Like” button, stop before you fill out an on-line form. Think. Where is your information going? Whose cause are you supporting?
You have more power than you realize and the capacity to effect change. We invite you to become more closely involved with the Meso Foundation, support our mission and assist us in getting unbiased information directly into the hands of those who are affected by this disease. We have a peer-reviewed research program where we provide grants which we hope one day will not only lead to more effective treatments but to a cure. We have testified before Congress multiple times. Through our direct advocacy efforts we have secured much needed federal funding for mesothelioma research. You can view this expert testimony here.
We invite you to visit our website www.curemeso.org, call us at 877-363-6376. If you’re on Facebook, please “Like” our Facebook page so you can receive the latest news about research, support, and advocacy. We are the real deal- we are your nonprofit and we need your support!
The past four months have rapidly flown by and I had hoped to correspond with you more often and in greater detail since assuming my new role. I am enjoying this position and I must confess it has its challenges, but each day, with the assistance of the Foundation’s talented staff, we make progress and work toward fulfilling our mission. Our mission statement is posted online and was crafted with the input of board and staff. We feel that we have clearly stated the objectives of the organization and are anxious to hear what your thoughts about the direction of the Foundation. I have scheduled a town hall meeting for next week as I have not had an opportunity to thank many of our supporters and to hear their viewpoints on the mission of the Foundation and how it is meeting their current needs.
Right now my focus is on the peer-reviewed grants program. I meet with the Board of Directors (BOD) on Thursday night for a decision on the number of grants to fund. As you may recall, the Foundation administers a robust peer-reviewed research grants program which is one of the major focuses of our Scientific Advisory Board (SAB). Please view the bios of this talented group of scientists who review the grants in great detail in a process based upon the system used by our National Institute of Health. Why such a laborious process? Simple – without a strong scientific review, and oversight following funding, your research dollars would have little value. We ensure that each dollar donated to our research program is treated with respect and good faith that it will be used as intended, with oversight and transparency. The SAB recommends the grants that are worthy of funding and the BOD has the fiscal responsibility to allocate budgeted funds for this purpose. I want to personally thank Dr. Lee Krug, Chair of our SAB for leading the process and keeping us informed of progress of the grant review. His strong leadership and scientific knowledge guided this rigorous process.
It is with great excitement that I await Thursday’s meeting and we will share this news with the community quickly and with great enthusiasm.
TOWN HALL MEETING
WHAT: Town hall meeting (conducted via conference call)
WHEN: 8:00 p.m. EST Wed. Jan. 23rd
WHO: Everyone is invited
WHY: To discuss Foundation updates and its programs and to allow for question/answer with executive director
WHERE/HOW: Conference call in number: (605) 475-4000
Participant Access Code: 216145