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July 13, 2009

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July 13, 2009

The Mesothelioma Applied Research Foundation, was extremely helpful during my husbands battle with Mesothelioma cancer. I was heartbroken after my husbands diagnosis and went searching for some info. about this cancer that I had never heard of. From my first contact with MARF I was introduced to a nurse who listened to all my questions and then answered them one by one. She put me in touch with a Mesothelioma patient in my area and I was able to meet this person, hear about her treatments and make informed decisions. I have developed a strong bond with this wonderful lady. I was able to take my husband to see several doctors that are experts in Mesothelioma because of the information I had attained. This saved us precious time. We met the best doctors on the East coast and we were able to make the most informed decisions on treatments, because this cancer has no cure each doctor has a different theory on treatment. I believe with out the help of MARF, my husband would have never survived for the 17 months he did. Most patients are given a 6-9 month life expectancy. MARF is heavly involved in getting the laws in the United States changed so everyday people will not be exposed to asbestos. Exposure to the deadly mineral is the main cause of Mesothelioma. Once Mesothelioma has taken a hold it is a terrible painful death. Ithink this is a wonderful Foundation and in much need of public exposure.

The Great!

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

gaining advise from other patients. Meeting people currently fighting Mesothelioma and getting information on the treatments and the doctors

Ways to make it better...

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

get news coverage

More feedback...

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

meeting other people in the same situation and Getting quick and correct information

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

wonderful, caring and informed

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

go before congress to get some laws passed to limit or stop the exposure to asbestos

Ways to make it better...

My husband,47, would have made a miraculous recovery.

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

not enough exposure to the media. Very rare cancer

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

Please consider this Foundation, people use to be in their later years when the Mesothelioma would surface and now it is taking it's toll on younger and younger folks and kids.

When was your last experience with this nonprofit?

2009

July 13, 2009

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July 13, 2009

MARF has been a wonderfully supportive organization, providing links between patients and doctors, researchers, and other patients as well as information on the latest research into the treatments and causes of mesothelioma. Patients with this rare disease often have little local access to information, and this is the one organization with links throughout the country that can provide help that is often not available through doctors and hospitals. MARF also lobbies for legislation to eliminate the danger of asbestos, which still exists, despite the widespread notion that it has been removed.

The Great!

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

...the heightened awareness of mesothelioma and increased research into new methods of treatment.

Ways to make it better...

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

...continue to seek more funding and to lobby for the fight against asbestos use.

More feedback...

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

...the community of mesothelioma families whom I met at the annual symposium and communicate with through the web site.

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

...extraordinarily knowledgeable and helpful.

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

...be able to support more aggressive research into experimental treatments of mesothelioma and to make the public more aware of the dangers of asbestos.

Ways to make it better...

...the organization received more funding.

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

...the limited of knowledge of mesothelioma and scarce media coverage of it.

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

...MARF is a wonderful organization that deserves support!

When was your last experience with this nonprofit?

2009

July 13, 2009

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July 13, 2009

It was by accident that I found Mesothelioma Applied Research Foundation, (MARF) actually. My brother was sick many years and had been repeatedly misdiagnosed and sent home every time he went to the doctor or hospital begging for help, pleading for more tests. He told me he thought he was dying. He was right. Michael died in a hospital clinic, and wasn't diagnosed until his autopsy. The coroner described his lungs as "just a mess..." It was after his death that I found MARF while trying to learn everything I could about mesothelioma, and to become an advocate to fight the fight my brother couldn't win. I don't know what I would do without my beloved friends and the wonderful staff at MARF! The sincere love, support, wealth of information and resources, and the advocacy one finds at MARF is almost unbelievable, and has helped me through the devastation of losing my brother. The victims themselves, the loved ones of those fighting, the loved ones of the warriors who have passed away from this horrible disease...we all find love, strength, support and lasting friendships within each other. It is sad indeed that we must come together from the tragedy of mesothelioma, but without MARF, many of us would not have the strength we have to fight for a total ban on asbestos, for mesothelioma funding to support research so that improved treatments and a cure can be found, ongoing treatment, support for the meso warriors and their families, and information resources. They have been a godsend to me!

The Great!

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

everything they do! For one organization to assist in so many ways is something I am so thankful for! The gratitude is also demonstrated everyday by members visiting the MARF website forums and boards.

Ways to make it better...

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

first graciously thank all the staff members who I feel I owe so much to since becoming a member of MARF.

More feedback...

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

everything that I have experienced with the staff and members since finding MARF!

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

just the very best people anyone could ever meet!

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

assist more patients and their families, and have increased research and treatment funding.

Ways to make it better...

there is no way it could be better except more funding to further the outstanding work MARF already does!

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

need for increased funding. MARF is fortunate enough to have wonderful doctors and researchers working to improve treatments and find a cure for mesothelioma. But that takes continous funding.

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

anyone who has ever been touched by mesothelioma in his or her life definitely will benefit from MARF

When was your last experience with this nonprofit?

2009

July 12, 2009

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July 12, 2009

As the caretaker of a meso patient, I found this site to be a God-send. I received hope, encouragement and the name of a meso specialist that I could take my husband to for a second opinion. During the course of his illness I received hope and encouragement by the patients and caregivers on the MARF discussion board. I shared our experiences, hope and knowledge gained bcz of the disease, and used that to encourage others and also at times to vent the grief that was welling up within me - by trying to end entries on a lighter or laughable note. My husbands 27-month long battle with meso ended just 3-1/2 weeks ago.

The Great!

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

Grants being funded. Patients connected with meso specialists (of which there are few, and difficult to learn about without the help of MARF), patients learning of clinical trials, and one patient getting almost immediate attention by a specialist.

Ways to make it better...

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

CONTINUE WHAT THEY ARE DOING, BUT FIND A BETTER, MORE SURE WAY TO GET THE GOV'TS ATTENTION BEFORE ALL THE TWIN TOWER MESO CASES APPEAR 20 TO 30 YEARS FROM NOW.

More feedback...

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

The staff to definitely include the Nurse Practitioner - who has worked with meso patients for 6+ years and SHE TRULY CARES ABOUT EACH AND EVERY PERSON

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

ALL OUTSTANDING

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

FUND MORE RESEARCH. WORK ON BANNING ASBESTOS IMPORTATION INTO AND USE IN THIS COUNTRY. PUT MARF OUT FURTHER INTO THE PUBLIC'S EYE - TO BE A BEACON OF HOPE TO OTHERS, AND THERE WILL BE MORE AND MORE WHO NEED MARF.

Ways to make it better...

There would already have been a CURE for meso or even if our primary care physician was aware of mesothelioma and its symptoms. My husband complained of breathing probs for 9 months and NOTHING done, not even chest xray for early detection.

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

GOING UP AGAINST THE GOVERNMENT AND SOME OF ITS AGENCIES WHO CONTINUE TO DENY THAT ASBESTOS IS STILL BEING USED AND THAT IT DOES CAUSE INCURABLE CANCER. RESEARCH TO FIND A CURE IS NEEDED. ASBESTS SHOULD BE TOTALLY BANNED.

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

I thank the good Lord that I found MARF. The last 27 months would have been like a LIVING HELL w/o the encouragement I was able to have bcz of their existence

When was your last experience with this nonprofit?

2009

July 12, 2009
1 person found this review helpful

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July 12, 2009
1 person found this review helpful

Until I found the Mesothelioma Applied Research Foundation, My wife and I had no hope in the treatment of her peritoneal mesothelioma. The information that was available through MARF was a lifesaver in that they were able to give us a direction and purpose in our battle, giving us above all else, HOPE that was not available to us anywhere.

The Great!

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

The other members in this organization that are living longer, fuller lives as a direct result of their help.

Ways to make it better...

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

Do nothing different than they all ready are.

More feedback...

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

Being able to interact with others around the country with this very rare disease.

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

The medical liason, Mary Hessendorf. and one of the officde staff.

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

Fund even more grants for research into the cure of this disease.

Ways to make it better...

Not possible, my experience has been great.

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

Getting a continuing revenue stream to keep funding the research grants. This is such an orphan disease that not that many people are aware of the problems facing the organization.

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

In my opinion this is the most professional, caring organization that I have ever seen.

When was your last experience with this nonprofit?

2009

July 12, 2009

more

July 12, 2009

Mesothelioma has affected a dear friend of mine. Knowing about this disease, where it comes from, how we as Americans can stop others from being diagnosed and hopefully finding a cure. . . . has changed my life significantly. Julie Gunlach, a Mesothelioma "diagnosee" loves life more than almost any other person I know. She is an intelligent, loving, beautiful, courageous, brave, mother, daughter, sister, wife and wonderful friend. She deserves a cure as does everyone else diagnosed with this disease and everyone else in the future diagnosed.

More feedback...

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

X

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

X

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

X

When was your last experience with this nonprofit?

2009

July 12, 2009

more

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 11, 2009

more

July 11, 2009

MARF brings patients & families from the dark pit of no knowledge about a diagnosis of mesothelioma into the light of hope & treatment! Most patients diagnosed with meso are told there's no effective treatment available. There is & MARF has the connections to it! They have a talented, tuely caring nurse/practioner to work with patients & their families. The best specialists for this terrible cancer can be found through MARF. My daughter is a survivor & I am now a volunteer offering support where & how ever I can. I also advocate for awareness about asbestos & mesothelioma. The MARF staff genuinely care for their cause & the people they help. They do a great job of funding research to find better treatments &, hopefully a cure. The on-line community formed on the MARF web site really care for each other & offer hope, support, knowledge, comfort, & love. Everyone with a horrific illness like meso should be so lucky as those who find this foundation! Whether or not my cancer recurs I will continue to work as a volunteer & stay connected to my MARF "family".

The Great!

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

patients lives saved who were told elsewhere that no treatment for mesothelioma was available.

Ways to make it better...

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

try to advertise more so that more mesothelioma patients found this foundation.

More feedback...

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

the differences made in peoples lives when they realize that there is hope.

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

knowledgable, proffesional, dedicated, & caring.

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

advertise to reach more patients & fund more research projects.

Ways to make it better...

I could find better ways to raise funds so that more research projects could continue.

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

fund raising to continue the search for better treatments & a cure.

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

the government needs to ban asbestos & fully fund mesothelioma research, all things that MARF works to make happen.

When was your last experience with this nonprofit?

2009

July 11, 2009

more

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.

More feedback...

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

July 11, 2009

more

July 11, 2009

When my 48 year-od husband was diagnosed with this disease, I was told he only had two years to live, MARF provided me with the information I needed to give him a shot at a cure. Their MESO Community Blog is an invaluable method of support for people dealing with this very rare and unique form cancer. This foundation works tirelessly to educate the public about this disease and to pass laws to decrease the number of people who continue to be exposed to asbestos.

The Great!

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

the lives of the many people who visit the Meso Community Blogs.

Ways to make it better...

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

need a lot of help, because the majority of people don't realize how much asbestos is still in our environments and how dangerous asbestos is.

More feedback...

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

having contact with others dealing with the same disease.

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

compassionate and dedicated.

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

prevent more people from developing mesothelioma by decreasing the amount of asbestos we are exposed to and make more doctor's aware of current treatments.

Ways to make it better...

more politicians paid any more than lip service to this cause.

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

ignorance and a lack of a high profile victim (like Michael J. Fox is for Parkinson's)

When was your last experience with this nonprofit?

2009

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