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65 Reviews
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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

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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

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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

October 30, 2013

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October 30, 2013

When my husband was diagnosed with meso in March of 2006, we knew nothing--what it meant, where to go for treatment, etc. The resources we found here were enourmously helpful, and so were the boards/forums. The support and comfort we received there cannot be quantified. Although my husband passed in 2008, I continue to keep up with the research. No one should have to die from meso--it's preventable, if ONLY we could get asbestos banned--but in the meantime, the research MARF funds goes a long way to helping find viable treatments, if not a cure.

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

October 17, 2013

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October 17, 2013

My husband was diagnosed in June 2012, we were devastated with the diagnosis of Mesothelioma and really needed someone who was in our shoes to walk through this with. We inquired at the hospital if there was a support group for this cancer and that evening we received a call from a patient who was willing to talk about their experience with Mesothelioma. In that conversation we were introduced to MARF and were invited to participate in a private group atmosphere. This place of comfort took on so many different roles in our fight. At first it was a place to ask and receive answers from our peers, it included an opportunity to have private conversations with people you relate to and share a common mind set. Then it was our lifeline to ask and understand medical issues so foreign to us in the beginning. Finally, it was our research link to our persistent stretch for a cure. It is a non profit research foundation that only wants a cure and it is given freely. Privacy and Respect

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 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 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 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 24, 2009
1 person found this review helpful

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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

July 23, 2009
1 person found this review helpful

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July 23, 2009
1 person found this review helpful

I fully credit the Foundation with saving my life. I was diagnosed with peritoneal mesothelioma in August 2006, and was told by my local physicians that I should get my affairs in order. I found the Meso Foundation and they led me to a specialist, and I will be celebrating my 3 year survival anniversary soon. their work in research and advocacy in this field is unmatched. I am honored to be affiliated with them.

The Great!

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

every patient given hope, and in the emerging awareness surrounding mesothelioma and continuing asbestos dangers.

Ways to make it better...

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

do nowhere near the job Chris Hahn does. His dedication is amazing to me.

More feedback...

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

their adaptability to current circumstances, and their ability to connect the patient, research, caretaker, and medical communities on a common front.

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

outstanding. I only wish there were a few more, as they are overwhelmed with the work they do.

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

possibly find a cure for mesothelioma, and launch a major public awareness campain about the dangers of asbestos still in use.

Ways to make it better...

The foundation were bigger and had more visibility. Easier to find.

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

$$$$$$$$, awareness, and the apathy of our own government officials in the fight to ban asbestos and fund meso research

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

the Meso Foundation is OUTSTANDING in its dedication to its cause.

When was your last experience with this nonprofit?

2009

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