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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.

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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 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

July 23, 2009

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July 23, 2009

My grandfather was diagnosed with mesothelioma in 2007. I found the Meso Foundation by accident through a Google search. I was so lucky. From day one, the Meso Foundation provided me and my family with loving support, advice on multiple treatment options for my grandfather, and a community that simply inspired our entire family. Without their outpouring of love and support (to a total stranger nonetheless), there is no way I could endured the process of trying to help my grandfather get well while caring for him the best I could in the process. The Meso Foundation is first class all the way. It's too bad this site only provides five star ranking. They truly deserve at least 100 stars!

The Great!

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

the lives of many people. Where there was no hope, now there is hope. Where there was only sadness, now there is a reason for joy.

Ways to make it better...

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

hire all the same staff that currently works there because they are second to none. I have full faith in Chris Hahan to run this organization so I have no desire to run it!

More feedback...

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

The people. They truly care about the cause of curing mesothelioma and banning asbestos. This is not just some group of people using this nonprofit as a stepping stone like some others do.

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

the most caring and giving people I have ever met. They took time for me whenever I needed it night or day no matter where they were in the world.

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

fund 100 research grants that may result in the cure of this dreaded disease.

Ways to make it better...

all their hard work had already led to a cure.

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

lack of awareness about the disease and lack of funding for research that will ultimately lead to a cure.

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

Mary Hesdorffer, the medical liaison for the Meso Foundation, is truly an angel. She has literally changed lives in so many ways and we all love her!

When was your last experience with this nonprofit?

2009

July 23, 2009

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July 23, 2009

My diagnosis of mesothelioma was a shocker. Trolling the internet for information turned up MARF--a source not only of information but also of hope. Even though I had been to a major cancer center for a second opinion, I had been offered nothing but symptom treatment. MARF showed me the way to one of the few medical centers that actually treat mesothelioma. The staff has been extraordinarily supportive and the organization's work continues to offer hope.

The Great!

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

the chat line where patients and caregivers share to an extraordinary degree.

Ways to make it better...

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

do just what it is doing: provide support and counsel; beat the drums for a ban on asbestos in the USA; keep up the call for research funds into treatment and cure of this disease.

More feedback...

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

support, validation, quick response to questions and concerns.

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

the entire staff -- the medical professional who provides information, the lawyer who works to raise funds, the people who steer advocacy issues, the webdesigner. Everyone.

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

fund more research and generate more interest among researchers.

Ways to make it better...

MARF had the money to fund significant research on this disease.

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

the mysterious reasons why asbestos is not yet banned in this country. Why?

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

without MARF, I would have had no hope of a future.

When was your last experience with this nonprofit?

2009

July 18, 2009

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July 18, 2009

The doctors told my family that my father had about 6 months to live, and that he should get his affairs in order. When it seemed like all hope was shattered, I stumbled upon the Mesothelioma Applied Research Foundation. Their supportive staff helped my family to find specialists, learn about clinical trials, connect with others battling this cancer, and most importantly this foundation gave us hope.

The Great!

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

the eyes of my father. When the doctor gave my dad a 6-month death sentence, his hopes and dreams were shattered. However, when the Mesothelioma Applied Research Foundation connected my father with survivors, he was able to live again:)

More feedback...

When was your last experience with this nonprofit?

2009

July 17, 2009

more

July 17, 2009

The Mesothelioma Applied Research Foundation is THE source for mesothelioma awareness, medical guidance and other support for anyone impacted by mesothelioma. Mesothelioma awareness and research for better treatments and a cure are desperately needed, and only MARF can meet these needs. MARF is also attempting to establish September 26 as an annual Mesothelioma Awareness Day and assists individuals who are working with their state legislators for state recognition of this date. My 39-year-old son died of mesothelioma in 2006, and MARF continues wto support me and my efforts to promote mesothelioma awareness in his memory.

The Great!

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

providing information and medical advice and guidance not available elsewhere.

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When was your last experience with this nonprofit?

2009

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