The Mesothelioma Research Foundation was an incredible source of hope and knowledge for me when I was diagnosed in 2007. They helped my husband get me to the right doctors and gave us support and the ability to interact with others who were going through the same situation. Over the last 8 years I have been able to use their wealth of knowledge to help me whenever I have questions or concerns. They have created a community for patients and caregivers that is essential when dealing with this disease.
The Meso Foundation is one of a kind, literally. This wonderful non-profit serves many needs of the meso patients and their caregivers. From travel grants to the latest medical trials and research, our meso journey would not have been the same without this wonderful group of knowledgeable, compassionate people.
When I was told to contact the Mesothelioma Foundation after my husbands diagnosis I was apprehensive. Not sure if this was going to be another secretly fueled Lawyer website. I did call but was still unsure. There were so many questions about the disease and treatment. As well as the immediate unknown about how our life was going to change without an income.
It was only after I contacted another family that also had just been diagnosed with Mesothelioma and heard their first hand account of how the foundation had answered all the unknowns that I made my second call to the foundation.
And after that second call and over the next two years the foundation guided us through surgery, recovery, chemo, radiation by giving us the tools to make informed descisions. In addition, with the support (closed and private) groups online I could always ask another family a question and receive a firsthand opinion from someone or from many who have walked that mile in my shoes. The online support groups were the day to day support that helped me as a caregiver get through the best days and the worst days of my husbands treatment. As someone once told me "it's the worst way to meet the best people". I hold the Mesothelioma Applied Research Foundation in the highest esteem. The help and guidance we received was like being embraced by a family and guided by angels every step of the way.
My father passed away from mesothelioma eight years ago. When he was diagnosed, it was almost impossible to find quality information about the disease or doctors who were experts, let alone familiar with this "orphan" form of cancer. Our entire family was extremely frightened, confused and had no idea how to help my dad cope with the journey which lay ahead of him By chance, my sister came across the name of the Foundation and spoke with Chris Hahn (who was there at the time) and later, Mary Hesdorffer. These individuals along with others, helped us to make sense of the available medical treatment (no cure) at the time, and gave us referrals to oncologists (and hospital programs) who were extremely experienced and who helped my father put up the most valiant fight he could and retain his dignity until the day he passed away. My dad (a Navy veteran and former Brooklyn Navy Yard employee) was put in touch with others battling the disease for information, support and friendship. The caregivers' support board and Mary were always available to answer questions and offer kind words in our time of need. I honestly do not know what we would have done without being able to turn to the Mesothelioma Applied Research Foundation and its incredible team of volunteers.
Totally run by professionals who work with Mesothelioma patients and families by educating and supporting them. There is no organization with better medical knowledge of this disease. Their nurse practioner knows and has contact with every mesotheioma specialist and is constantly up-to-date on newest clinical trials.
I volunteer to help others overcome living with Mesothelioma. This organization helped save my life, it's the least I can do to help it help other patients and community.
The Mesothelioma Applied Research Foundation deserves a huge amount of credit for the fact that my husband is alive today.
In 2012, my husband was diagnosed with peritoneal mesothelioma. It was difficult to find resources because it's an exceptionally rare disease, and we needed someone with experience who could treat it in the abdomen -- unlike most meso patients who need treatment in the lungs. There are very few experienced surgeons in the U.S. for peritoneal mesothelioma, and it was daunting to wade through the internet to find one because even though we live in one of the largest cities in the country, there wasn't a single oncologist in town who specialized in treating peritoneal meso.
The Mesothelioma Applied Research Foundation not only helped us to find experienced onocological surgeons, but provided guidance and counsel. My husband's cancer didn't image on CT scans (it was found in the pathology after his appendix was removed), so moving forward with the drastic treatment of HIPEC--the standard of care for peritoneal meso--was scary. I can't imagine having done it without the experience, wisdom, and guidance of Mary Hefsdorffer at the Foundation.
After my husband's HIPEC surgery, there were tons of life-threatening complications. It has been and continues to be a rough road, but the Foundation has provided education and emotional support. They have helped us to attend conferences where we've learned first hand from doctors, researches, survivors and bereaved about this disease.
The Mesothelioma Applied Research Foundation has had an incredibly profound impact on my life. I'm forever grateful for everything they do!
The Mesolthelioma Applied Research Foundation is nothing short of wonderful in dealing with patients dealing with this disease and their caregivers. They are ALWAYS available to answer questions and are in the know on everything about this disease, whether it is related to doctors, drugs, clinical trials, etc.. I would, without a doubt, direct anybody facing this disease their way.
In the fall of 2007 my fiancee Brian was diagnosed with mesothelioma. Needless to say were were devastated. This being a rare cancer, we knew we had to seek out a Dr and hospital who dealt with this cancer on a regular basis to give Brian his best chance of survival.
I had read about Mesothelioma Applied Research Foundation (MARF) in a nursing journal only 1 month prior to Brian's diagnosis. I did not realize at the time how serendipitous that was. I found that article and contacted them. I spoke with the nurse practitioner, Mary, who ultimately helped guide us all the way through the 2 years of treatment with where to find resources and physicians, advice for chemotherapy related issues, and even just listening a time or 2. I believe in my heart that Brian would not have had those 2 years had it not been for this organization and their expertise, guidance, and knowledge of leading experts in this field. Thank you so much for all you do.
My fiancee Brian Holton was diagnosed with pleural mesothelioma in October of 2006. As one might imagine, we were devastated and did not know where to turn as the oncologist Brian had initially seen had no idea what to do with him. It took him 4 weeks to get around to ordering a biopsy for Brian. Fortunately one of my co-workers had seen a current article about mesothelioma in a medical journal and the Mesothelioma Applied Research Foundation (MARF) was featured in this article. It had contact information for Mary Hesdorffer RN, NP and I contacted her straight away.
Mary called me back the next day and spoke to me at length about mesothelioma and what our next steps should be. She put us in touch with the experts at New York-Presbyterian Hospital where there were doctors and nurses who dealt with this rare cancer on a regular basis. Over the next several months of chemotherapy Brian's tumor shrunk by 60%. However within that first year Brian's health insurance no longer allowed him to seek treatment out of state and again Mary Hesdorffer, through MARF, assisted us in finding a capable doctor. Also through MARF I was able to connect with other patients and caregivers going through the same thing we were which was a blessing for us.
As Brian's cancer progressed the local oncologist ran out of options for Brian. I got in touch with MARF, and Mary again put us in touch with a researcher at the National Cancer Institute, a division of the National Institute of Health, who specialized in mesothelioma. We went for treatment for several months until finally Brian succumbed to mesothelioma in 2008.
I believe that the two additional years Brian survived after his diagnosis, and they were good/happy years for us, was possible because of the expertise and help of this wonderful organization.
When I was first diagnosed with Mesothelioma, the Mesothelioma Applied Research Foundation was there for me, and continues to stand with me every step of the way. I cannot put into words the knowledge and support I have obtained from this agency.
I don't know what we would have done without this organization when we discovered we needed help with this diagnosis. The support, education, and expertise is invaluable and has been a constant thread of hope when hope was hard to find. I thank God for this organization and do everything I can to let people know about it because REAL help with Meso is so hard to find. This is a charitable organization with true grit heart, compassion and up to the moment expertise.