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B & D Bendix

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MESOTHELIOMA APPLIED RESEARCH FOUNDATION INC
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

MY ROLE:
Client Served & I attended the recent Meso Symposium in Washington, D.C.