Update from the ED: My time at UPenn and the Fox Chase Cancer Center

by Mary Hesdorffer, Nurse Practitioner
Executive Director, Mesothelioma Applied Research Foundation

Mary HesdorfferI received an invitation to attend the first ever community lung cancer day at Fox Chase Cancer Center in Philadelphia, Pennsylvania. Though the focus was on lung cancer, I was given the opportunity to have a table where I could promote the work of the Foundation as well as mingle with the community. I did not meet any mesothelioma patients, but I did speak with two individuals who lost parents to mesothelioma, and they thanked me for our work.

I was also able to meet the lung team, one of whom trained with Dr. David Sugarbaker (small world indeed). The thoracic nurse navigators were very interested in our work and agreed to provide their patients with our brochures, as did the respiratory therapists. We have awarded a number of grants to the researchers at Fox Chase Cancer Center, and Dr. Joe Testa, a past recipient, was given our pioneer award last year.

This event followed a very successful one day mesothelioma conference at UPenn.  Melissa Culligan took on the main responsibility of organizing the conference and did a superb job. Don’t be fooled by the sweet and quiet disposition of Melissa, as underneath is a stern taskmaster keeping the docs on their toes. She is the heart of the UPenn program. Dr. Joe Friedberg assigned the topics for our presentations and kept the momentum going with his usual god humored quips. I was given the presentation title “the unmet needs of the mesothelioma patient.” As promised, I brought your voices to the presentation, and attendees were moved by your stories and our pleas for new drug therapies, better opportunities to participate in clinical trials, as well as more supportive care services.

Dr. Lee Krug, who will be accepting the role of BOD chair in January also presented, and I was so pleased knowing that this well-respected medical oncologist will be leading us to fulfill our mission. Dr. Raffit Hassan, former SAB chair caused quite a stir with his report on the progress he is making with his trial of SS1P. I received some exciting news from Dr. Steve Albelda, a member of our SAB; He will be taking a sabbatical in Hawaii for 3 months to collaborate with Dr. Michele Carbone. It is very nice to see these relationships building and the sharing of resources and data.

As is usual at UPenn, their energy and enthusiasm for treating mesothelioma is heartwarming, and I left knowing that they will continue to build and expand upon the terrific services that they already offer to mesothelioma patients. Dr. Friedberg trained a young surgeon from Taiwan, and he flew in to be part of the conference as did Dr. Paul Bass from the Netherlands. I was proud to be among those who presented, and I will be updating you on the science sessions at both this conference and the conference in Sydney. It is obvious to me that we are seeing the fruits of our labors with more trials having a targeted approach based upon much of the science that we have funded.

Mary Hesdorffer, NP, to Present at UPenn Conference

Mary Speaking at 2013 SymposiumMary Hesdorffer, Nurse Practitioner and the Mesothelioma Applied Research Foundation’s executive director, will be presenting at a conference at the University of Pennsylvania (UPenn) on November 15. Penn Mesothelioma and Pleural Program and Penn Presbyterian Medical Center will be hosting the conference titled “Pleural Mesothelioma 2013: Multidisciplinary Diagnosis, Treatment and Investigation.” Mary has been selected to present alongside national and international mesothelioma experts “to provide the full spectrum of perspectives on the many challenging and controversial topics surrounding this cancer.”

Mary Hesdorffer received her undergraduate degree at the College of New Rochelle in New York and went on to receive her Masters of Science at the same institution. She is a fully credentialed Nurse Practitioner and has spent 16 years actively treating patients with mesothelioma. Mary has an expertise in the development and implementation of clinical trials. She is published in peer reviewed journals and has lectured nationally on topics pertaining to mesothelioma with particular emphasis on clinical trials, as well as symptom and disease management.

At the University of Pennsylvania conference, Mary will present “The mesothelioma patient – what are the unmet needs?” This lecture will review what is currently being done for mesothelioma patients and examine what aspects can be improved and what additional measures should be taken to better fulfill patient needs. In the “Pleural Mesothelioma 2013” brochure, Mary Hesdorffer is described as “the person with likely the greatest number of contacts with mesothelioma patients in the world.”

Lee Krug, MD, a member of the Meso Foundation’s Board of Directors, will also be presenting at “Pleural Mesothelioma 2013”. Dr. Krug is an Associate Professor of Medicine at the Division of Medical Oncology at the Memorial Sloan-Kettering Cancer Center. Described as “an acknowledged world leader,” Dr. Krug will present “Mesothelioma – Is there a standard of care, is there a staging system?” This lecture “will discuss the current staging of malignant pleural mesothelioma, including the limitations of this system, and will review what is currently considered ‘standard’ treatment.”

View the full brochure for “Pleural Mesothelioma 2013: Multidisciplinary Diagnosis, Treatment and Investigation” for further conference details.

Notes from Mary Hesdorffer, Executive Director of the Mesothelioma Applied Research Foundation

mary1The 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

FROM THE HEADLINES: International Team from the University of Hawai’i Identifies Protein Critical in Development of Mesothelioma

Former Mesothelioma Applied Research Foundation’s grant recipient, Dr. Haining Yang  (University of Hawai’i), is once again making news with the recent discovery of a protein that is activated following exposure to asbestos leading to the development of malignant mesothelioma.  As reported by MedicalXpress.com, Dr. Haining Yang, PhD, and an international team of researchers have identified HMGB1 as a critical protein in the development of malignant mesothelioma. Dr. Yang’s findings are the cover story of the July 1’s Cancer Research, one of the nation’s leading cancer research publications.

“We are very excited about this discovery and are extremely pleased that it was also chosen to be the featured cover story,” said Yang. “The next step is to translate this discovery into actual treatments for mesothelioma patients.”

This discovery into the growth of mesothelioma offers scientists an opportunity to develop specific therapies for mesothelioma patients. Mesothelioma, a malignant tumor of the lining of the lung, abdomen, or heart known to be caused by exposure to asbestos is considered one of the most aggressive of all cancers. Approximately 3,000 Americans are diagnosed with mesothelioma every year, yet available treatments have limited effectiveness. Identifying this biomarker for early detection will help shed light on developing new treatments for mesothelioma prevention and therapy.

Earlier this year this same lab worked collaboratively with others to announce the first gene associated with malignant mesothelioma BAP1. Dr. Giovanni Gaudino from the University of Hawai’i will be discussing BAP1 and its possible utility as a target for therapy and identifying those at high risk to develop mesothelioma at the Meso Foundation’s 2012 Symposium during the “Demystifying Scientific Breakthroughs” panel. It is a very exciting time for mesothelioma research and the promise for further scientific breakthroughs will be the focus of discussion at the Symposium.

The current study was an international effort and included investigators from the University of Hawai‘i Cancer Center, the John A Burns School of Medicine in Honolulu, the San Raffaele University and Research Institute in Milan, Italy, the National Institutes of Health in Bethesda, Md., and the New York University School of Medicine.

FROM THE HEADLINES: The Mesothelioma Applied Research Foundation Appears before the United States Senate Committee on Appropriations

Last week, on June 6, 2012, Mary Hesdorffer, MS, APRN, nurse practitioner and medical liaison for the Mesothelioma Applied Research Foundation, appeared before the United States Senate Committee on Appropriations – Subcommittee on Defense, at their Fiscal Year 2013 Appropriations Outside Witness Testimony Hearing. Speaking with the voice of the Meso Foundation and its community, Mary made an appeal to the lawmakers for their attention concerning mesothelioma and its impact on those who served to defend the United States.

The Meso Foundation played a critical role in making peritoneal mesothelioma and pleural mesothelioma eligible topics within the Congressionally Directed Medical Research Program. The first ever DoD award for mesothelioma occurred in 2008 when one investigator obtained over $1.3 million for research. A total of $7.7 million has been awarded to mesothelioma research through the Peer Reviewed Medical Research Program and the Peer Reviewed Cancer Research Program, both divisions of the Congressionally Directed Medical Research Program, which is administered by the Department of Defense since Fiscal Year 2008. Continue reading “FROM THE HEADLINES: The Mesothelioma Applied Research Foundation Appears before the United States Senate Committee on Appropriations” »