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lomarty

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MESOTHELIOMA APPLIED RESEARCH FOUNDATION INC
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

MY ROLE:
Client Served & I made some donations in memory of those who had lost battle, when learning of new widows. I made a necklace of crystal beads to send to a couple who were battling meso and having annual fund raisers. She was able to sell chances on the necklace, addi.