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July 17, 2009

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July 17, 2009

Amazing group of people. The support they have given our family is overwhelming. They are advocates for patients and continue to fight for a cure and legislation to end this disease. My uncle lived 10 years with this disease. During that time MARF became a part of his daily life. He touched others with the disease thru MARF and gave them support. Hi wife also became part of MARF. She went from organizing school fund raiders to becoming a leader in national fund raising for MARF. She also supports patients and their families today. MARF helps those that are given a diagnosis that to many is a mystery.

The Great!

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

The people that are here today as a result of information given to them from MARF

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

Seeing the relationships that are made by connecting people

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

Helpful and honest

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

Stop the importing of asbestos by increasing awareness to the general public. This could end meso.

When was your last experience with this nonprofit?

2009

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.

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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 16, 2009

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July 16, 2009

I believe that MARF has truly helped my family members deal with the tragic news of having cancer in a way that I admire. The organization has helped them become members of a community of hope in a time when hope isn't easy to come by.

The Great!

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

the capacity of helping my family members through a very difficult time.

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When was your last experience with this nonprofit?

2009

July 16, 2009

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July 16, 2009

When my husband was diagnosed with Mesothelioma, we knew nothing about this disease.Even after his lung was removed until his death 8 months later, we knew very little.After I found MARF,I realized how many people are diagnosed with meso each year.I also found out about major treatments available for patients and tons of support for patients and the families. I have hope that one day with the work that is done by this non-profit organization [ Marf]and the funding for research that a cure will be found.

The Great!

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

The hope for patients.

Ways to make it better...

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

Continue to get as much info as possible, and challenge all possible ways to raise funds , so a cure will eventually be possible.

More feedback...

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

The caring and knowledge that is found on this site.

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

very kind, very caring.

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

Go a long way to finding a cure for meso.

Ways to make it better...

I had found it earlier.

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

needing more funds for research.

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

Mesothelioma Applied Research Foundation deserves an award for the work it does.

When was your last experience with this nonprofit?

2009

July 15, 2009

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July 15, 2009

this is a great organization that has helped by friend Bonnie Anderson to be here for her grandaughter. thank you

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

Find the cures that will help more people

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.

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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

When my father was diagnosed with Mesothelioma in October 2008, not knowing anything on the disease, I quickly began researching on the internet, which led me to MARF. I cannot say enough about MARF. I would give it 1 million stars if I could. Their website is the greatest resource for anyone seeking information on the disease or just moral support. Not only does their website provide an astounding amount of information on the disease, their boards connected my family and I to others who were once in our shoes, providing us with support and guidance. Additionally, Mary Hersdorffer, the medical liason, provided more help than imagineable. She connected us to medical resources we didn't even know existed! I credit her and the site's promptness in contacting my family to part of why my dad is still alive and fighting today. The site has provided inspiration, understanding, and hope to my family, as I'm sure with others as well. I don't know what we would have done had we not found MARF. Thank you from the bottoms of all our hearts!

The Great!

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

my father's case. After posting on the community board that my father was recently diagnosed, Mary Hersdorffer called us the next day providing us with guidance on what we needed to do. She (and MARF) has been with us every step of the way.

Ways to make it better...

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

do nothing different

More feedback...

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

that the community is like a large family. They are all there to provide support and guidance. They really help each and every one of us through the turmoils of having a loved one suffering from this nasty disease.

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

incredible! They are so extremely knowledgeable and willing to help all of us. It's truly a blessing.

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

hopefully find a cure, or bring a cure much much closer to reality, for this horrible disease.

Ways to make it better...

(nothing would have made it better- it's already great!)

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

I can't think of any challenges.

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

My family and I appreciate this organization so much. We really wish to see this organization continue to do all the great work it's done.

When was your last experience with this nonprofit?

2009

July 14, 2009

more

July 14, 2009

it is okay but there is another california foundation that seems to do more and has higher visibility.....can't remember the name but they have high profile people to make their case

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

ok

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

fund more research

When was your last experience with this nonprofit?

2009

July 14, 2009

more

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

more

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!

Photos

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

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