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July 17, 2009

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July 17, 2009

MARF has been a tremendously helpful resource for our family. When my mother was diagnosed with mesothelioma, we had no idea what it was or knew anything about the disease. Now we have a network of people for support, info on the latest developments, and lots of hope.

The Great!

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

ways that have positively influenced us.

More feedback...

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

the personal support.

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

great!

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

help find a cure for mesothelioma!

When was your last experience with this nonprofit?

2009

July 15, 2009

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July 15, 2009

MARF has been a life line for me with its wealth of information, caring and resourceful staff, and a wonderful community, a “family” of supporters on its website. My husband of 47 years died after courageous one year battle with mesothelioma, a cancer caused by asbestos. He had worked directly with asbestos some 40 years before and at various times since. That is one of the hardest parts to understand......that it could be in your system so long before anything surfaces. I wish whole heartily that there was some magic solution that would erase this whole meso mess, but there isn’t.....YET!!! Someday there will be a solution, there will be a cure.....I HAVE TO BELIEVE THAT!!!. And all those who have gone before, in some way or other, have helped with the research, the trials, etc, each little bit of knowledge gained will contribute towards that solution, that cure. I HAVE TO BELEIVE THAT!!!! MARF has been hard at work trying to reach that goal by researching for a cure, for treatment options, for better and earlier ways to detect meso, and most importantly for banning asbestos usage. With more funding, so much more can be done to reach this goal.

Photos

The Great!

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

genuine caring support and font of information and aid from all the MARF staff and all its on-line supportors

Ways to make it better...

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

continue the way they have been going, encouraging and inspiring more awareness.

More feedback...

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

the warm feeling of family with all.

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

THE GREATEST!!!!!

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

do so much more....FIND THAT CURE!!!

Ways to make it better...

we had found MARF earlier and there was a cure already in place for meso.

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

because of the relativity low numbers of "victims" a real lack of awareness of asbestos and of meso and then a lack of support and funding for research.

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

A GREAT BIG THANK YOU to all at MARF for the support they have given me.

When was your last experience with this nonprofit?

2009

July 14, 2009

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July 14, 2009

Our son was diagnosed with Mesothelioma two and one-half years ago. Since there are only approximately 300 cases annually of the type of meso from which he suffers, it is known in the medical community as an "orphan disease". This designation has been applied because it receives very little funding from the typical sources to help find a cure. Additionally, information about treatment options is hard to find. The resources of M.A.R.F. have assisted us to locate the limited number of medical doctors in the United States that have expertise in treating the disease. It is one of the most valuable services offered because of the scarcity of information. In addition, the Foundation solicits private money for research and lobbies Congress to provide public funding as well. M.A.R.F. has a very small staff that is able to make a substantial impact. They plan and conduct an annual symposium attended by 300+ people in which the leading physicians present the most recent advancements in treatment and survivors share their stories. The staff is very efficient and able to offer services well beyond the limited resources provided to them.

The Great!

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

The information received by our son to guide him in his effort to find the most effective treatment. The participation of patients, caregivers and families to lobby Congress for public funding to help find a cure. The private fund raising efforts.

Ways to make it better...

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

More feedback...

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

The depth of information they are able to provide with very limited staff and funding.

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

Dedicated and capable.

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

Provide more information to the medical community to effect earlier detection of the disease. Also, it would have the resources to solicit more funds for research efforts to find a cure.

Ways to make it better...

More donations were available to help them provide more services.

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

Funding. The information available to oncologists and physicians must be increased but there is precious little money available to disseminate the info.

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

M.A.R.F. is doing an outstanding job of assisting sufferers of mesotheliom and their caregivers in spite of a limited staff and funding.

When was your last experience with this nonprofit?

2009

July 14, 2009

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July 14, 2009

i was diagnosed with mesothelioma in dec. 2005. i was 23. my mother found MARF one day while researching my illness. all through my treatment she kept telling me about this organization and their website. she kept telling me about all the other patients, and caregivers, and family members. she also kept learning about new clinical trials and facts about mesothelioma. then she joined as a volunteer so she could help find a cure. so once i was feeling better, i checked out MARF's website. i am so glad i did! i learned so much about my disease. stuff my doctors didnt know. i met wonderful people who have become a huge part of my life and fight against cancer. and i too have become a volunteer. i want to make a difference. i want asbestos banned and i want funding for research. so does MARF. they work so hard for the victims and their families. the patients are givin hope, when its needed most. the staff knows each person and their case personally and knows you on a first name basis. i can truly say they have become part of my family! i dont know what i'd do without MARF!

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The Great!

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

my own experience.

Ways to make it better...

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

work just as hard as they already do.

More feedback...

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

meeting new people. the other patients and their families are a big part of my life, and the staff and directors are my friends.

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

anywhere from volunteers to the head director and the board. every one of them were very kind and got to know me and my case personally.

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

fund research to find answers for families, better treatments, and a cure!!!

Ways to make it better...

i had found them earlier.

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

getting asbestos banned completely in the usa.

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

i love MARF!

When was your last experience with this nonprofit?

2009

July 13, 2009

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July 13, 2009

To suffer with cancer is a difficult task at best; to suffer alone is unconscionable. My husband was struck with mesothelioma in September of 2007. Internet searches for information about mesothelioma were dismal at best until I happened upon MARF. It’s difficult for me to see MARF as an organization but rather a group of people who are truly passionate about helping those afflicted with mesothelioma as well as their caregivers, families, and medical personnel associated with this disease. MARF not only offers much needed information about meso in a straightforward, easy to understand manner, they offer hope. And as anyone associated with cancer will tell you, we should all be allowed hope. The folks at MARF are quick to return phone calls, knowledgeable with answers and work diligently to support and fund research that may one day offer a cure for this terrible cancer.

The Great!

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

the progress they continue to have.

More feedback...

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

The personal care they offer each of us.

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

deeply caring.

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

continue to fund research; find a cure; help more patients and their families with the financial stresses of traveling for treatments.

When was your last experience with this nonprofit?

2009

July 13, 2009

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July 13, 2009

When my husband of thirty-eight years was diagnosed with mesothelioma back in 2000, we were told by the first doctor we went to that he had approximately six months to live. Though that doctor didn't say, "Go home and die," he wanted to operate and he'd had only twelve meso patients before my husband -- none of whom lived more than a month or two past the surgery. Someone told us that the Mesothelioma Applied Research Foundation had a packet of information about the disease and meso doctors. We got that packet, learned there was more to fighting meso than letting a doctor with no experience practice on a loved one -- that there was a chance to lengthen my husband's life even if meso couldn't be cured. We got four years of being together instead of six months thanks to information about Dr. Sugarbaker and other doctors we found through the Mesothelioma Applied Research Foundation. There was even helpful advice on dealing with "ambulance-chasing lawyers" and on avoiding scammers -- interesting because it was founded by a lawyer whose father, I believe, had contracted meso. The Foundation has come a long way in the last nine years. I see it connecting people into a network of assistance with all manner of questions that meso victims and their families have to deal with. MARF responds to real needs! (Bec Gilbert)

The Great!

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

The increased life span of my husband who died of mesothelioma (thanks to the information MARF provided).

Ways to make it better...

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

Keep the good people in it that are there.

More feedback...

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

Helpfulness without pressure to repay anything.

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

June Breit has become a friend as has Jill Vaughan -- both of them meso victims and very bright and involved people.

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

Fund more research

Ways to make it better...

Can't think of how to improve it. It has been working constantly to improve its outreach and serve meso victims better.

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

Getting lazy people like me to help.

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

MARF is a very worthwhile organization

When was your last experience with this nonprofit?

2009

July 13, 2009

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July 13, 2009

The Mesothelioma Applied Research Foundation has been and remains an important organization in my fight with mesothelioma. Upon receiving my diagnosis in July of 2007, my wife and I were in a state of chaos. Definitive information about this disease, its treatment and contact with another person who was fighting this battle was non existent for us until we found the Foundation. Within 24 hours of placing a call to the 800 phone number, we received a call from a staff nurse who was willing to spend time answering all of our questions. The additional resources provided by the Foundation did, and continue to provide support and information for us. This is truly a deserving, client centered, organization which should be supported in any way possible.

The Great!

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

My contact with other meso patients

More feedback...

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

The direct and indirect support available from the staff and web site

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

I have received information and support from the Foundation staff, and other organization volunteers who are battling this disease.

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

Select and support research to further treatment of this disease, and continue to provide information to patients diagnosed with this meso

When was your last experience with this nonprofit?

2009

July 13, 2009

more

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

more

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 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

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