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July 11, 2009

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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

July 11, 2009
1 person found this review helpful

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July 11, 2009
1 person found this review helpful

In 2002, I was at what I thought was the peak of my life. I was a 52 year old nurse with a great career. I was weeks away from marrying the love of my life, and we had just bought our dream home together. I was physically active, an avid hiker, biker, snorkeler and free diver, and my fiancee and I looked forward to traveling the world together. My happiness was boundless. The only problem was a nagging cold that I couldn't seem to get rid of - my doctor felt antibiotics would do the trick, but took a chest xray "just in case". That xray was the key to a nightmare whose name was malignant pleural mesothelioma, a lethal type of cancer. My professional training, my doctors, and every thing I read on the Internet told me I was doomed to die within months - maybe a year if I was lucky. I have never felt so alone or so afraid, or so without hope. I could not stop crying. But then I found MARF - the Mesothelioma Foundation, and a small light began to shine in all the darkness that surrounded me. Here were people who gave me hope, information on treatment options that could help me, and put me in contact with other patients like myself. And they stayed with me, every step of the way, cheering me on and telling me not to give up. That was over 7 years ago. It has not been an easy road to travel, but I have never had to travel it alone - not for an instant. My fiance stuck with me (and became my husband) and so did the people at MARF. The clinical information they provided never failed to help me identify cutting edge treatments that gave me a fighting chance to live. Their unwavering support and encouragement saw me through the rough spots. They buoyed my spirits by sharing both my highs and my lows with unconditional compassion. Without this organization, I am certain I would have curled up into a terrified ball, given up, and died. I will never be able to adequately describe what they gave me: they gave me HOPE, the sweetest gift there is. They gave me back my life.

The Great!

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

The hope engendered in patients and families who thought they had no where to turn and no hope for survival. People literally say to me that MARF "saved their lives". I know this to be true and not hyperbole, as it happened to me as well!

Ways to make it better...

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

Try to make the public more aware of the risks that everyone faces of developing mesothelioma.

More feedback...

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

Communicating with other patients and families. Helping them helps me to grow.

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

Overwhelmingly dedicated and kind.

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

Help more people, maybe even help find a cure for mesothelioma.

Ways to make it better...

I had known about this organization earlier.

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

Increasing public awareness and finding funding in the current financial climate.

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

Thank you MARF for my life!

When was your last experience with this nonprofit?

2009

July 10, 2009

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July 10, 2009

my parents home was insulated with asbestos. My mother was badly burnt when trying to clean it and her breathing has been difficult for year. No one would agree it was dangerous, no one would agree that it was the cause of all the issues. We knew better, their home was rebuilt from brick to drywall, to rid of this from the home. There needs to be a cure, we need to find that to help those who suffer.

More feedback...

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

they want a cure and want to assit those with this terrible condition

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

solve the problem and save many from suffering

When was your last experience with this nonprofit?

2009

July 10, 2009

more

July 10, 2009

In January 2009, my Grampy was diagnosed with Mesothelioma, an awful cancer caused by asbestos. I had seen the commercials on tv about Meso but really did not know or understand it. We were told he had 5 months and left with no options and little hope. I decided to take to the internet. I stumbled upon the MARF website and it was a miracle. I learned about Meso and learned that there is some hope. I signed up for a book "100 Questions and Answers" and received it in about a week. The book was free and after I read it, I passed it on to my Grampy. He had more hope after reading that book than he did since he was disgnosed. My family has been passing the book on and it is on the 8th person now (with 20 to go). After signing up on the website, a nurse called to make sure I was getting the answers I needed. I genuinely felt like I was no longer alone, struggling for answers. As a young adult, I am a member of facebook. MARF has a page and I got to contribute by helping them raise money by adding friends. In a little over 3 months their members have increased by over 20,000! MARF is a great foundation helping to spread the world that Mesothelioma is an awful disease but one that can be fought! They have given me an opportunity to help, comfort and most importantly, they have given my Grampy hope.

Photos

The Great!

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

how they show people affected by this disease that they care. My Grampy had no hope until we found this organization.

Ways to make it better...

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

keep spreading the word and letting people know that asbestos is around us. It needs to be made illegal!

More feedback...

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

Although Mesothelioma is thought of as an "old person's disease" they keep current with facebook and other sites to keep young people involved.

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

caring, honest and helpful! They all went out of their way to make sure I got the information I needed.

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

research to find a cure for this currently uncurable form of cancer.

Ways to make it better...

there was a cure for Meso!

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

awareness and fundraising. Since Mesothelioma affects fewer people than other types of cancers, it does not get the attention it deserves. Also, since it affects fewer people, it is harder to raise money to find a cure.

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

Mesothelioma is an awful disease. It is painful and watching someone you love deal with it is heartbreaking. MARF helps with that heartbreak. Please help the cause!

When was your last experience with this nonprofit?

2009

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