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75 Reviews
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October 5, 2013

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1 previous review
July 21, 2009

MARF is an awesome organization that truly cares about the patient as well as the care givers. They work really hard along with their members to get the word out regarding this orphaned disease and t... more

October 5, 2013

When my husband was diagnosised with Mesothelioma naturally fear set in . But somehow I/we found
Our way to MARF. This nonprofit is a godsend! They are not associated with any attorney's. The volunteers
Who call & talk with you, help you find the best care possible for your love ones. They
are awesome people. The staff at MARF are always willing to help you. The caregivers support groups are super . I can go on & on. Simply put they saved me. Thank you to all the staff especially, Mary H...

Ways to make it better...

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

Wish we lived closer to their headquarters

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?

2012

July 21, 2009

MARF is an awesome organization that truly cares about the patient as well as the care givers. They work really hard along with their members to get the word out regarding this orphaned disease and the research money it so badly needs to find a cure! If it was not for MARF I'm not sure how I would have survived these past 3 years! My husband was diagnosised on 8/31/06 and the foundation and it's resources have been terrific!!!!

The Great!

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

my own family and friends of educating them as to what Meso is.

Ways to make it better...

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

have a symposium on the east coast - Boston

More feedback...

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

the caring people and volunteers

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

GREAT and INFORMATIVE

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

surely have research monies to find a cure or new treatments!

Ways to make it better...

I was more outgoing and could get my community more involved in MARF

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

financial

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

we should never give up!!!!!!!

When was your last experience with this nonprofit?

2009

October 5, 2013
1 person found this review helpful

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October 5, 2013
1 person found this review helpful

I am a medical oncologist who treats a large number of patients with mesothelioma. From a physician's point of view, perhaps the most important aspect of the organization is the grant support they provide to fund research. Too few grant opportunities are available for this uncommon disease, yet MARF has been a consistent source of funding over the years for the top, scientifically peer reviewed projects in mesothelioma. Equally important, though, is, the tremendous emotional and educational support that MARF provides to my patients. I give each of my mesothelioma patients information about the foundation, and everyone who contacts them has benefited. I have been involved with MARF for about 10 years, and have seen dramatic change in organization over that time. The foundation has clearly established itself as the leading advocacy, educational, and scientific organization fighting this disease.

Ways to make it better...

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

like to see it grow so that there is even greater awareness about this amazing organization.

More feedback...

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

October 5, 2013
1 person found this review helpful

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October 5, 2013
1 person found this review helpful

My son was diagnosed with mesothelioma in December 2006, and died in September 2009. Between his diagnosis and his death he sought information on the nature of the disease and possible treatment options. The most useful, honest and unfiltered information he received was from personnel and contacts at the Mesothelioma Advanced Research Foundation. My son contacted the Foundation numerous times for advice on potential treatments and clinical trials, and relied on them for important guidance. He came to believe they were the preeminent source of this information, and they provided this information with a caring attitude and strong psychological support as well.
As I began to learn about the Foundation, it was apparent to me that their stated focus of guiding the patient victims and providing funds for research was more than an altruistic goal. They really live that mission. As a result I have joined the Board of Directors and committed my time as well as monetary resources to their very worthy efforts.

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

October 4, 2013

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October 4, 2013

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.

Ways to make it better...

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

provide additional funding for research and patient outreach/education

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 4, 2013

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October 4, 2013

I came into contact with MARF in January of 2009 and started to volunteer in September 2012. This is a group of people who care about the whole person, not just the diagnosis, or the part of the body with Meso. They care about you and your family and all those affected by the diagnosis. And they offer support to each one. And unlike other Meso organizations, they are not a front for a law firm whose real interest is is getting you to sign on with them so they can get part of your money. This is THE go to place for the most current information on treatment and trial, for details on advocacy and legislation, and for people coming together in love and support. Read the other reviews! There is no finer organization. And I simply would not volunteer my time with any other organization.

Ways to make it better...

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

give them unlimited financial resources.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

November 8, 2012
1 person found this review helpful

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November 8, 2012
1 person found this review helpful

I had heard about the MARF for a number of years and was impressed by what I had read. However, in recent months I have been privileged to meet some of the key staff at MARF and was truly overwhelmed by their compassion and expertise. At the MARF conference in July 2012, there was an enormous amount of support for sufferers and carers as well as the opportunity for closed sessions where people could speak openly about their own situation. There are many people who talk big and deliver little but MARF IS THE REAL DEAL!

More feedback...

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

October 17, 2012
1 person found this review helpful

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October 17, 2012
1 person found this review helpful

I was diagnosed with Pleural Mesothelioma in 2007 at the age of 31. I was told it was a deadly aggressive cancer. My doctors did not know alot about it and how to treat it. I was luckly sent to Memorial Sloan Kettering Cancer Center in NYC where I had a great surgeon. Then after surgery I became depressed and I felt alone with my disease. I was searching the web and came across the Mesothelioma Applied Research Foundation. I signed up to attend a symposium that they were having in Washington D.C. I felt so inspired after seeing all that everyone does in the foundation to raise awareness, find answers with doctors that are experts in the field. I was grateful to see what the scientists have been working on to find better treatment options for patients and their endless search to find a cure. I got to meet more patients then I thought existed. We are all a big family, I look forward to seeing them every year at the advocacy events and symposiums. Most of all I went from being angry to being empowered. I learned I alone can make a difference with advocacy and fundraising for the foundation. Its a wonderful needed support group that has amazing people working that really cares for us.

Photos

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?

2012

July 30, 2009
2 people found this review helpful

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July 30, 2009
2 people found this review helpful

Where do you turn when you've diagnosed with a deadly disease you can't even pronounce? The Mesothelioma Applied Research Foundation Inc., helped by dear childhood friend by providing her and her family with up-to-date research materials, treatment options, an incredible support system and hope.

More feedback...

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

Educate all lawmakers and the general public about this insidious disease.

When was your last experience with this nonprofit?

2009

July 24, 2009
1 person found this review helpful

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July 24, 2009
1 person found this review helpful

My husband was diagnosed December 31, 2001 with meso at the young age of 39. We were told the same by our local physician, get your affairs in order, travel to Europe etc....you have 6 to 8 months to live. I immediately hit the internet that New Year's Eve night and located the Meso Foundation. Left them a message and received a call from Chris Hahn, the Executive Director that January 2, 2002. I contribute that initial contact to my husbands' survial of 5 years. He succumbed to the disease December 21, 2006 at the age of 44. The outstanding caring, knowledge, assistance this foundation has given my family is beyond words. My heartfelt thank you and gratitude to this wonderful organization.

The Great!

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

my own personal experience and I see the results everyday with the current victims and their families.

More feedback...

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

is their caring for all. Their compassion to help in all aspects of finding a cure, helping the victims and their families get the best possible care, and to assist them in coping.

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

one word, OUTSTANDING.

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

assist in research to find the ultimate, a cure. To assist victims and their families in medical costs, travel and housing at a medical facility that specializes in meso, which these facilities are far and few between.

When was your last experience with this nonprofit?

2009

July 24, 2009
1 person found this review helpful

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July 24, 2009
1 person found this review helpful

After a 2 week stay in the hospital, my husband was diagnosed w/pleural meso in March of 2008. He was only 51. The pulmonologist told us to go home & get our affairs in order. Of course, we didn't do that but started on a chemo regimen with a local oncologist. It has been 16 months & we've had our ups & downs with this horrific disease. The day of the diagnosis, I got on the internet & found MARF. After looking at other sites, MARF was the most informative & personable site & so started our relationship with staff, victims, volunteers, widows, caregivers and world of information to help in our fight with meso. Everyone is so caring & compassionate because they too, have been touched by this disease on a personal level. Most importantly this foundation has given us hope.

Photos

The Great!

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

several states proclaiming Meso Awareness Day on Sept. 26th.

Ways to make it better...

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

more MARF locations throughout the country for local network.

More feedback...

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

the friendships I've made and the knowledge learned from caring & compassionate people.

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

be closer to finding a cure for mesothelioma!

Ways to make it better...

ALL our family had computer knowledge to share in this wonderful organization called MARF!

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

funding for research & cure; awareness not only to the public but our national leader & all under him!

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

no matter what time of day, you can find comfort & hope at MARF. BELIEVE IN A CURE!

When was your last experience with this nonprofit?

2009

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