Login with FacebookMESOTHELIOMA APPLIED RESEARCH FOUNDATION INC
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I was a General Member of the Public & My brother died of mesothelioma and MARF has been great support
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It was by accident that I found Mesothelioma Applied Research Foundation, (MARF) actually. My brother was sick many years and had been repeatedly misdiagnosed and sent home every time he went to the doctor or hospital begging for help, pleading for more tests. He told me he thought he was dying. He was right.
Michael died in a hospital clinic, and wasn't diagnosed until his autopsy. The coroner described his lungs as "just a mess..."
It was after his death that I found MARF while trying to learn everything I could about mesothelioma, and to become an advocate to fight the fight my brother couldn't win.
I don't know what I would do without my beloved friends and the wonderful staff at MARF! The sincere love, support, wealth of information and resources, and the advocacy one finds at MARF is almost unbelievable, and has helped me through the devastation of losing my brother.
The victims themselves, the loved ones of those fighting, the loved ones of the warriors who have passed away from this horrible disease...we all find love, strength, support and lasting friendships within each other. It is sad indeed that we must come together from the tragedy of mesothelioma, but without MARF, many of us would not have the strength we have to fight for a total ban on asbestos, for mesothelioma funding to support research so that improved treatments and a cure can be found, ongoing treatment, support for the meso warriors and their families, and information resources. They have been a godsend to me!
The Great!
- I've seen the results of this organization in... everything they do! For one organization to assist in so many ways is something I am so thankful for! The gratitude is also demonstrated everyday by members visiting the MARF website forums and boards.
- What I've enjoyed the most about my experience with this nonprofit is... everything that I have experienced with the staff and members since finding MARF!
- The kinds of staff and volunteers that I met were... just the very best people anyone could ever meet!
- If this organization had 10 million bucks, it could... assist more patients and their families, and have increased research and treatment funding.
Ways to make it better!
- My experience would have been better if... there is no way it could be better except more funding to further the outstanding work MARF already does!
- If I ran this organization, I would... first graciously thank all the staff members who I feel I owe so much to since becoming a member of MARF.
- In my opinion, the biggest challenges facing this organization are... need for increased funding. MARF is fortunate enough to have wonderful doctors and researchers working to improve treatments and find a cure for mesothelioma. But that takes continous funding.
- One thing I'd also say is that... anyone who has ever been touched by mesothelioma in his or her life definitely will benefit from MARF
I was a 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
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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 seen 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.
- 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!
- My experience would have been better if... 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.
- If I ran 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.
- 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
I was a General Member of the Public & I contacted their medical liason who helped me with referrals, common practices and results and reac tions to treatment.
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Until I found the Mesothelioma Applied Research Foundation, My wife and I had no hope in the treatment of her peritoneal mesothelioma. The information that was available through MARF was a lifesaver in that they were able to give us a direction and purpose in our battle, giving us above all else, HOPE that was not available to us anywhere.
The Great!
- I've seen the results of this organization in... The other members in this organization that are living longer, fuller lives as a direct result of their help.
- What I've enjoyed the most about my experience with this nonprofit is... Being able to interact with others around the country with this very rare disease.
- The kinds of staff and volunteers that I met were... The medical liason, Mary Hessendorf. and one of the officde staff.
- If this organization had 10 million bucks, it could... Fund even more grants for research into the cure of this disease.
Ways to make it better!
- My experience would have been better if... Not possible, my experience has been great.
- If I ran this organization, I would... Do nothing different than they all ready are.
- In my opinion, the biggest challenges facing this organization are... Getting a continuing revenue stream to keep funding the research grants. This is such an orphan disease that not that many people are aware of the problems facing the organization.
- One thing I'd also say is that... In my opinion this is the most professional, caring organization that I have ever seen.
I was a Volunteer & Volunteered at Earth Day in St. Louis obtaining signatures to ban asbestos from the U.S.
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Mesothelioma has affected a dear friend of mine. Knowing about this disease, where it comes from, how we as Americans can stop others from being diagnosed and hopefully finding a cure. . . . has changed my life significantly. Julie Gunlach, a Mesothelioma "diagnosee" loves life more than almost any other person I know. She is an intelligent, loving, beautiful, courageous, brave, mother, daughter, sister, wife and wonderful friend. She deserves a cure as does everyone else diagnosed with this disease and everyone else in the future diagnosed.
The Great!
- What I've enjoyed the most about my experience with this nonprofit is... X
- The kinds of staff and volunteers that I met were... X
- If this organization had 10 million bucks, it could... X
Ways to make it better!
- If I ran this organization, I would... X
- In my opinion, the biggest challenges facing this organization are... X
- One thing I'd also say is that... X
I was a Client Served & I was a caregiver for my husband who had mesothelioma.
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As a caregiver I found MARF to be invaluable ! They are able to give expert medical advice, info on the latest treatments and where they are available, emotional support for patients and caregivers, funding for research for the development of a cure, and a community of folks that are working diligently to change the laws that govern the use of asbestos.I am not sure what I would have done with out them but I do know that we made it educated and supported because of MARF!
The Great!
- I've seen the results of this organization in... the day to day care I gave my husband during his battle with mesothelioma.
Ways to make it better!
- My experience would have been better if... and only if I had found them earlier than I did.....