I have mesothelioma. I have survived post-diagnosis (more than 5 years) because I have had access to and care by some of the most expert medical personnel who are dedicated to not only treatment, but also developing new medicines to beat this disease. I found those doctors and nurses because the Mesothelioma Applied Research Foundation made the connection for me. Simply put, MARF is one of the primary reasons I am alive.
Moreover, the Foundation was and is instrumental in promoting and funding the research that may allow me, and my peers, to continue to hold back and defeat meso. Additionally, it offers support tailored to patients, to caregivers and family members, and to the bereaved. The Foundation also has created systems for peer-to-peer discussions and contact among those groups, which let the affected know they are not alone, and spread information on shared experiences, what works, what doesn't, and other items that save time and reduce stress for patients or caregivers.
The Foundation stands alone as THE nonprofit organization dedicated to aiding patients in receiving care, funding peer-reviewed research into new treatments and drugs, educating patients, physicians, and those at risk of developing the disease, spreading awareness of the disease and its causes, and advocating tirelessly in Congress and the DoD for funding for research.
This is an outstanding organization.
In full disclosure, several years after the Foundation started helping me find appropriate treatments, I was pleased to accept an invitation to join the Board of Directors. This review system only allows designating one relationship with the organization, and I have received far greater benefit as a "Client Served" than I will ever be able to repay as a "Board Member".
This nonprofit is essential to all who suffer from Mesothelioma. I unfortunately have this disease and might not be alive if it wasn't for them. After my initial diagnosis they helped me weed through all of the misinformation out there and helped point me to the surgeon who has since made it so that I currently show no evidence of disease. Also once my surgeon left his practice to go somewhere else, they helped me find a suitable location to have my follow up exams that was much less stressful to get to.
The Mesothelioma Applied Research Foundation is an amazing group dedicated to helping meso patients and their caretakers around the world. The staff is so genuine and caring. They go above and beyond to help patients like me find the best treatments available. They assist with travel when needed. They're experts in the field and therefore have a plethora of knowledge to share. MARF works to bring patients together for networking and support. They're always quick to share breakthrough information related to cancer and mesothelioma. The Foundation truly cares for the wellbeing of every single patient. Their support has helped me through the various stages of my disease and I'm forever grateful for it.
MARF is an organization that saves lives every day!!! They support patients, caregivers, provide education and most importantly they bring the Meso community together!!!
MARF is THE key Meso resource to patients, caregivers and the scientific community! It is there to help, guide, educate and provide support and research resources!!!
My sister was diagnosed with peritoneal mesothelioma and died seven months later. She was 45 years old, never worked with or around asbestos. We really don't know her true exposure. We had so many questions and found that MARF was the BEST source of information, help, and caring at a time when all else felt lost. I continue to follow them as I want remain informed and continue to help spread the word about mesothelioma so lives can be saved and no one will have to bury their loved ones. Asbestos kills!
My hubby was diagnosed in 2006 and at that time we did not know anyone who had had this cancer.....I found The Meso Foundation ...then MARF on line, and it became my resource for everything.....info.... counsel.... comfort ...... and courage !! They are truly a heaven sent group..... My hubby died in 2007 and I have been pleased to see they have continued to be a beacon to those affected by mesothelioma !!
As a caregiver I found MARF to be invaluable ! They are able to give expert medical advice, info on the latest treatments and where they are available, emotional support for patients and caregivers, funding for research for the development of a cure, and a community of folks that are working diligently to change the laws that govern the use of asbestos.I am not sure what I would have done with out them but I do know that we made it educated and supported because of MARF!
The Meso Foundation has helped me as a caregiver and my husband as a patient with peritoneal mesothelioma with information and support groups through Facebook, telephone calls, symposiums, etc. They also fund much needed research for a cure. They have become a lifeline and a new community for me. Everything is also done with the utmost integrity and humanity.
As a Mesothelioma Foundation board member for the last 3 years I can't say enough about this foundation. It is the only foundation funding PEER REVIEWED medical research, dedicated to finding better treatments and ultimately the CURE for this ugly disease.
PEER REVIEWED research is a critical aspect to finding a cure. Our non paid Science Advisory Board is comprised top doctors and researchers with years of experience in Mesothelioma care. They review 50 plus research grant proposals annually and award grants based on MERIT ONLY. We are the only foundation that does that, and have given out over 8 million dollars in research grants in the past 11 years. Results from several of those grants have received additional research funding from the Department of Defense peer reviewed medical research program.
Additional services include patient, caregiver, and bereaved support groups in individual or group settings.
The Foundation Board is comprised of non paid personnel who have a personal connection to this disease, either as a caregiver who lost a loved one to mesothelioma, as a patient, as a doctor or researcher, or have a military background. One third of newly diagnosed patients have a military background.
The Foundation is directed by a nurse practitioner with over 16 years experience in treating mesothelioma patients, and is known world wide for her expertise. Her small staff works relentlessly to advance the cause to find better treatments and a cure.
Why am I so attached to this foundation? Because I believe it gives the mesothelioma community the hope we need in finding better treatments and a cure. Yes, I did say we, as I am a 7 year mesothelioma survivor.
As a 7 plus year survivor the Meso Foundation has been the go to place for everything meso related. It's prime directive is to fund much needed research. Available research funding puts Meso at the bottom of the list, so the funds provided by the Meso Foundation act as seed grants for proof of concept. It has funded over $8 million to date. Results from several of those grants have been awarded major funding by the DOD and other organizations. The Meso Foundation also provides patient and caregiver support 24/7, as well as having it's hand on the pulse of all the meso treatment centers and available treatment trials. A no brainer, the go to place.
My husband was given 6 months to live after being diagnosised with peritoneal mesothelioma. This was in 1998. Thankfully we found a trial in NY and he survived 11 years. It was after the first or second year that the Meso Foundation opened it doors and we found them on the internet. They immediately began to give us the support we so disperately needed. They knew about about the disease and offered us hope. We began going to symposiums and meeting many other patients and caregivers. Craig began giving others hope as he continued to beat the odds and live a strong productive life. I found my niche in fundraising for the Foundation. It empowered us against a monster. The Foundation helps people get the help they need and provides much more than information. They provide support of other patients and that is priceless.
I have had the privilage of working with people at the Mesothelioma Applied Research Foundation (MARF) since it began. It has literally helped to save hundreds of lives by giving not only hope but by actually giving advice to patients who are fighting an orphan disease. Most, if not all patients are told there is nothing that can be done for them when the are diagosised with this horrific cancer and given about 6 months to live. MARF not only given them HOPE but also helps with "scholoships" to help patients that don't have the means to get to their first doctors appointment. There are only a handful of specialiest that treat this disease and MARF raises more awareness and funding than government ever has. Having just lost my husband this past April to mesothelioma, I can tell that the MARF organization is an organization that is not only needed but is a lifeline for many that have no place else to turn. shellysbelieving
The Meso Foundation has been an incredible support in my life. In 2009, my mom was diagnosed with Mesothelioma. She passed away 2 years later when I was 24 years old. She was the third person in her family to die from Mesothelimoa, and also not the last. Her sister, my Aunt passed away a year later in 2012.
Mesothelioma is a cancer that has literally destroyed my family. It can often be an isolating disease. Few people have heard of it, even fewer know what it truly is. The Foundation has been there for my family in every way, for my mom & aunt who were patients, for me as a loved one and now as a bereaved.