Mary Hesdorffer Brings Her Passion for Helping Mesothelioma Patients to the Mesothelioma Applied Research Foundation
Mary Hesdorffer is a unique figure in the mesothelioma community. As a nurse practitioner, she is in a position where she can treat individual mesothelioma patients. She’s also a dedicated advocate for those mesothelioma patients, serving as Executive Director of the Mesothelioma Applied Research Foundation. Mary’s dual roles have earned her respect from oncologists, researchers and patients alike.
Mesothelioma is a rare, painful cancer primarily caused by exposure to airborne asbestos fibers. Treatment manages the symptoms to hold the cancer at bay, but there is no known cure for this deadly disease. Through the Mesothelioma Applied Research Foundation, Mary and other staff members are “dedicated to ending the suffering caused by mesothelioma” through funding of high quality and promising research projects. The foundation helps patients connect with national mesothelioma experts while advocating in Washington, D.C., for federal mesothelioma research funding.
In February, Mary took time from her busy schedule to talk with Belluck and Fox about her efforts on behalf of the mesothelioma community. She also explained the full range of services that the Meso Foundation offers to the public.
Mary was quick to point out that the Mesothelioma Applied Research Foundation is the only national non-profit for mesothelioma that funds peer-reviewed research. She also noted that it is the “largest global non-profit funder of mesothelioma research.” The Foundation instituted its grant funding program in 2000 and has since awarded nearly $8.5 million in grants, stimulating the field of mesothelioma research and encouraging scientists to devote their life’s work to this under-researched cancer. Some of the recent advances in mesothelioma research can be attributed to the grants.
Through the Mesothelioma Applied Research Foundation, patients can contact Mary directly for medical information about mesothelioma, its symptoms and treatments. Mary has worked with mesothelioma patients for nearly 15 years and she still spends time at the National Cancer Institute each week as a nurse practitioner. Mary has also published various medical papers on the disease.
“It is very important to me that I continue hands-on care of mesothelioma patients,” said Mary. “By being in the hospital and clinic I can stay current on new medications and treatments and provide the most up-to-date information to patients seeking advice from me.”
When talking to mesothelioma patients, Mary is able to offer them an “unbiased second opinion.” Due to her in-depth training and knowledge of mesothelioma she can get the patients’ full history and understand their diagnoses. That allows her to explain critical information that patients may not have understood during the initial conversation with their doctor.
“It is not unusual to have a detailed discussion about the disease and treatment, then the patient will call back just a few days later for a clarification of what was said before,” said Mary. “There is just too much to take in at once, and it is important to repeat information and let them know where to find critical information.” Mary is happy to have as many conversations as it takes.
“I can help patients by bringing the medical jargon down to a level they can understand as they grapple with their treatment decisions,” said Mary.
The Meso Foundation also provides information about available mesothelioma clinical trials and mesothelioma specialists. The Meso Foundation and Mary have researched each institution “without prejudice.” She serves as a filter to help patients find a clinical trial or specialist that may fit their needs and requirements. By talking to the patients and getting their full history, staging and type of the disease, list of previous treatments, insurance issues and travel restrictions, Mary can provide enough information to help the patients make an informed decision.
We asked Jennifer Gelsick, whose father Don Smitley is a mesothelioma survivor, about Mary’s services. Gelsick says Mary was instrumental in helping get her father into the Memorial-Sloan Kettering Cancer Center’s WT-1 clinical trial.
“Mary is great, she’s so knowledgeable about everything,” says Gelsick.
In another case, the son of a Pennsylvania man who is a mesothelioma patient reached out to Mary and told his mother that she is the “nicest, kindest nurse who discussed just about everything I could imagine” related to the next step for his father’s mesothelioma treatment. His mother then called Mary late one Sunday evening, fully expecting to leave a message, to further discuss her husband’s options. To her surprise Mary answered saying, “I thought I might be needed.” That night Mary helped set the course of treatment for the man.
“I have a passion for taking care of patients, seeing a successful treatment, seeing good decision-making and seeing a patient take ownership of his or her disease,” Mary said. But, she added, “I can’t do that if I’m not available when the phone calls come in.”
To find out more about the Mesothelioma Applied Research Foundation access its website at curemeso.org.