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Review for Mesothelioma Applied Research Foundation Inc, Washington, DC, USA

Rating: 5 stars  

The Mesothelioma Applied Research Foundation is a remarkable non-profit organization that truly helps and cares about patients and care-givers. My mother was diagnosed with pleural meso about a year ago and we have found so many resources and information from MARF. We have utilized the resident nurse, Mary Herdorffer, with her plethora of information on doctors, medicinal information, and overall treatment options. She is available via phone or email basically every day of the week for patients to access for questions or data. My father and I attended the International Mesothelioma Symposium, which MARF has organized for the past few years, in Washington D.C. and received so much information, contacts, and feeling of hope! We were able to travel to Capitol Hill and voice our stories and ask for help with research funding, awareness, and support in banning asbestos legislation to our state's representatives. We learned valuable information from the top researchers and doctors from around the world who focus on this disease. I plan to attend this Symposium year after year, and I vow to stay involved with the foundation because it creates hope for a cure for this terrible disease. It funds research grants, is in the process of making September 26 a Mesothelioma Awareness Day nation-wide, and helps thousands of people.

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

Research grant funding and building awareness of this disease throughout the world.

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

Find ways to spread awareness even more, especially on the fact that asbestos is not banned in the United States.

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

The contacts we have created and the feeling of community.

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

Amazingly kind, generous of their time, and well-organized. Very knowledgeable or would take the time to find answers if need be.

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

Find a cure! There are so many researchers and doctors who have proposed ideas on how to help patients, but the organization has limits on how many it can fund do to its own resources.

Ways to make it better...

Not applicable

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

Getting the word spread about this rare disease and its causes. Also, creating awareness for doctors about this disease and the treatment options, because there are very few experts in this disease.

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

Mesothelioma patients need help! They are suffering and the median survival rate is tragically low at about 12 months. My mother has been in constant treatment for over a year, and she wants to LIVE! She needs better treatment options now!

When was your last experience with this nonprofit?


Role:  General Member of the Public & Participated in Symposium, donate funds, utilize foundation's resources, volunteered to help advocate for this disease and research grant money.