Mesothelioma Applied Research Foundation Inc

Rating: 4.95 stars   101 reviews

Address:

1317 King Street Alexandria VA 22314 USA

Mission:

The mission of the Mesothelioma Applied Research Foundation (Meso Foundation) is to eradicate mesothelioma as a life-ending disease. Malignant mesothelioma is a rare cancer of the linings of the chest or abdomen. Asbestos exposure is the only known cause. The Meso Foundation solicits and rigorously reviews applications, and then awards significant grants, for research on the prevention, early detection, and treatment of mesothelioma. Through its web site and literature, its direct communications, and annual International Symposium on Malignant Mesothelioma, the Foundation provides patients, family members and physicians with hope, encouragement, and information. The Meso Foundation employs a full-time mesothelioma nurse practitioner to help patients navigate their treatments. In addition, the Foundation works to enhance awareness of this disease and to encourage federal funding for research.

Programs:

The Mesothelioma Applied Research Foundation (also known as the Meso Foundation) is the only 501(c)3 nonprofit organization dedicated to eradicating mesothelioma and easing the suffering caused by this cancer. It does so by focusing on four main program areas: • RESEARCH: Funding and support of the highest level of peer-reviewed mesothelioma research; • EDUCATION: Educating patients, their families, risk populations, and the public at large about mesothelioma; • SUPPORT: Providing patient support services; • ADVOCACY: Advocating Congress for increased federal funding for mesothelioma research. The Meso Foundation is the only non-government funder of peer-reviewed scientific research to establish life-saving treatments for mesothelioma. To date, the Foundation has directly awarded over $8.7 million and, through its advocacy efforts, has directed another $8.9 million to promising mesothelioma research.

2015 Top-Rated Nonprofit
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877-363-6376
www.curemeso.org

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Reviews for Mesothelioma Applied Research Foundation Inc

Rating: 5 stars  

1 person found this review helpful

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.

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

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.

If I had to make changes to this organization, I would...

provide additional funding for research and patient outreach/education

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

1 person found this review helpful

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.

 
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Rating: 5 stars  

1 person found this review helpful

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.

 
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Rating: 5 stars  

1 person found this review helpful

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".

 
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Rating: 5 stars  

2 people found this review helpful

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.

 
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Rating: 5 stars  

2 people found this review helpful

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.

 
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Rating: 5 stars  

MARF is an organization that saves lives every day!!! They support patients, caregivers, provide education and most importantly they bring the Meso community together!!!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

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!!!

I've personally experienced the results of this organization in...

helping patients, driving to a cure, enhancing treatment, assisting in QOL and being an advocate!

If I had to make changes to this organization, I would...

The kinds of staff and volunteers that I met were...

WONDERFUL!

If this organization had 10 million bucks, it could...

Save lives!!!!!!!!! Do more of what it is already doing!

Ways to make it better...

Grow bigger and stronger!

In my opinion, the biggest challenges facing this organization are...

The disease is still very unrecognized across the medical community.

One thing I'd also say is that...

When was your last experience with this nonprofit?

2009-6-01

 
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Rating: 5 stars  

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!

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

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 !!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

 
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1 previous review
Rating: 5 stars  

20 people found this review helpful

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!

I've personally experienced the results of this organization in...

the day to day care I gave my husband during his battle with mesothelioma.

If I had to make changes to this organization, I would...

Ways to make it better...

and only if I had found them earlier than I did.....

In my opinion, the biggest challenges facing this organization are...

One thing I'd also say is that...

When was your last experience with this nonprofit?

2008-8-01

 
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Rating: 5 stars  

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.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

 
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1 previous review
Rating: 5 stars  

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.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

 
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1 previous review
Rating: 5 stars  

22 people found this review helpful

MARF has been a true life line for me since being diagnosed with peritoneal mesothelioma in 3/07. It is by far the best clearing house for up to date information regarding treatment centers, trials, doctors and alternatives. It has a small compassionate staff of dedicated people that I have met personally at the annual symposium. They know each of the "Warriors" and Caregivers by first name and go out of their way to stay in touch with us by email or phone. The Scientific Advisory Board is comprised of what I consider the leading doctors in the field of mesothelioma treatment and are dedicated to finding a cure. This organization gets stronger each year and is dedicated to finding a cure. The annual symposium is unique in that it brings together doctors, patients and caregivers for 3 days of information sharing, networking, and relationship building. Finally, the medical liaison found under the "GET HELP NOW" link is our standard response to all new comers looking for direction. Mary is dedicated to our growing community and is up to date on all aspects of the disease and treatments.

I've personally experienced the results of this organization in...

the relationships it helps build with staff, doctors, caregivers and "WARRIORS"

If I had to make changes to this organization, I would...

The kinds of staff and volunteers that I met were...

caring, compassionate, involved, sincere and dedicated.

Ways to make it better...

this ugly disease can be brought under control and eventually cured.

In my opinion, the biggest challenges facing this organization are...

first getting a total ban on asbestos usage in the United States. Second raising mesothelioma awareness by pushing for 9/26 as an annual mesothelioma awareness day. Third finding major grant dollars for serious long term research towards finding a cure.

One thing I'd also say is that...

When was your last experience with this nonprofit?

2009-1-01

 
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