Login with FacebookMESOTHELIOMA APPLIED RESEARCH FOUNDATION INC
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I was a General Member of the Public & None of us knows when this might be what we need in the future for ourselves or a loved one
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this is a great organization that has helped by friend Bonnie Anderson to be here for her grandaughter. thank you
The Great!
- If this organization had 10 million bucks, it could... Find the cures that will help more people
Ways to make it better!
- In my opinion, the biggest challenges facing this organization are... Having the resources to find the cure
I was a Client Served & I was my husband's caregiver and soul mate. Now I try to help others cope with this dreaded cancer.
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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.
Tribute Pictures at MARF Symposium 06/2009
Mary Hesdorffer, MARF Guardian Angel
The Great!
- I've seen 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
- 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!
- My experience would have been better if... we had found MARF earlier and there was a cure already in place for meso.
- If I ran this organization, I would... continue the way they have been going, encouraging and inspiring more awareness.
- 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.
I was a General Member of the Public & I joined the website/community boards to gain more information & support on my father's disease (mesothelioma)
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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 seen 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.
- 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!
- My experience would have been better if... (nothing would have made it better- it's already great!)
- If I ran this organization, I would... do nothing different
- 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.
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
The Great!
- The kinds of staff and volunteers that I met were... ok
- If this organization had 10 million bucks, it could... fund more research
Ways to make it better!
- In my opinion, the biggest challenges facing this organization are... lives in the shadow of more prominent foundations
I was a Client Served & I attended the recent Meso Symposium in Washington, D.C.
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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 seen 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.
- 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!
- My experience would have been better if... 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.
The picture were taken at the MARF Symposium, June 2009, in Washington DC with Mary Hesdorffer our guardian angel.