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75 Reviews
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August 13, 2014

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1 previous review
July 24, 2009

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!!! more

August 13, 2014

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

More feedback...

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

July 24, 2009
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!!!

The Great!

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!

Ways to make it better...

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

More feedback...

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.

When was your last experience with this nonprofit?

2009

August 8, 2014

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1 previous review
July 11, 2009

MARF saved my life! Without the information or caring provided by this wonderful organization I would not have made the choices for treatment that is so hard to find for Mesothelioma. I saw a grandch... more

August 8, 2014

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.

Ways to make it better...

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

have the government require all oncologists to attend their conferences.

More feedback...

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

July 11, 2009

MARF saved my life! Without the information or caring provided by this wonderful organization I would not have made the choices for treatment that is so hard to find for Mesothelioma. I saw a grandchild born and can watch her grow after being told I would die within a year. Without the research and patient connections this organization supports, most of us would think we are alone with this illness. I now help new patients, families and even my other doctors learn what the options are for surviving. My story can be found at the website, no need to tell it again. I am alive!

Photos

The Great!

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

Patient outreach and the information given out to new patients and the increasing years of survivors.

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What I've enjoyed the most about my experience with this nonprofit is...

Being able to help those that are affected with Mesothelioma and give them hope that surviving is possible, and to get the chance to meet the research and medical community to speak one on one to them each year at the international symposium.

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

are the most caring dedicated people who are all trying to believe there will be a cure.

When was your last experience with this nonprofit?

2009

August 7, 2014

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August 7, 2014

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!

More feedback...

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

August 7, 2014

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1 previous review
July 12, 2009

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, ... more

August 7, 2014

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 !!

More feedback...

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

July 12, 2009

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 Great!

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

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

Ways to make it better...

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

More feedback...

Ways to make it better...

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

When was your last experience with this nonprofit?

2008

July 15, 2014

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2 previous reviews - show all
October 4, 2013

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 ... more

July 15, 2014

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.

More feedback...

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

October 4, 2013

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.

More feedback...

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

July 22, 2009

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.

The Great!

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

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

Ways to make it better...

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

More feedback...

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.

When was your last experience with this nonprofit?

2009

July 15, 2014

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July 15, 2014

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.

More feedback...

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

July 14, 2014

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1 previous review
July 13, 2009

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... more

July 14, 2014

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.

More feedback...

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?

2014

July 13, 2009

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 Great!

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

it is my belief that many lives have been saved and will continue to be saved.Many patients that have this disease have little or no information about this disease and are told to go home and die.MARF not only gives HOPE they give them valuable resources

More feedback...

When was your last experience with this nonprofit?

2009

October 31, 2013

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October 31, 2013

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.

Ways to make it better...

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

Make more people aware of it!

More feedback...

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

October 31, 2013

more

October 31, 2013

This nonprofit was instrumental in its early days as families like ours watched a loved one suffer so much before death. Whenever I called there was a friendly person to provide advice. Our loved one has been gone for 11 years now. However, this nonprofit is still helping others in so many new ways! We continue to support their efforts for a health issue that is so devastating. This organization is top notch!

More feedback...

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

A little

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?

2002

October 30, 2013

more

October 30, 2013

When my father was diagnosed with mesothelioma we had no idea where to turn. I stayed up researching on the internet through the night, fighting my way through the law firm sites to try to get REAL help! Within 36 hours I was on the phone with MARF. It was a Sunday afternoon when Mary Hesdorffer answered the phone. That same Sunday, she had us on the phone with the top thorasic surgeon at New York University Medical Center in Manhattan. By Tuesday, my dad was in his office and Friday he was conducting a surgical biopsy.

This organization is the real deal! They have been there for us from the diagnosis and even now. The mission is to help patients and their loved ones to advocate, fight, survive and live well with mesothelioma. Of course, they also want to find a cure so pivotal research is funded.

My dad was with us for 20 months after his diagnosis. All of my initial research said that we would be lucky to get six months. There is not a doubt in my mind that we would not have had all of that time had we not found MARF. Even now that my father is no longer here, Mary and the foundation are still there trying to support us in our grief and loss. My mom calls Mary her angel: for without that support it would have been impossible to carry on.

Ways to make it better...

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

nothing!

More feedback...

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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