1 person found this review helpful
MESOTHELIOMA APPLIED RESEARCH FOUNDATION INC
Invite reviews
Invite friends and colleagues to share their experiences with this nonprofit
November 8, 2012
1 person found this review helpful
I had heard about the MARF for a number of years and was impressed by what I had read. However, in recent months I have been privileged to meet some of the key staff at MARF and was truly overwhelmed by their compassion and expertise. At the MARF conference in July 2012, there was an enormous amount of support for sufferers and carers as well as the opportunity for closed sessions where people could speak openly about their own situation. There are many people who talk big and deliver little but MARF IS THE REAL DEAL!
More feedback...
How does this organization compare with others in the same sector?
Very Well
How much of an impact do you think this organization has?
Life-changing
Will you recommend this organization to others?
Definitely
When was your last experience with this nonprofit?
2012
1 person found this review helpful
October 17, 2012
1 person found this review helpful
I was diagnosed with Pleural Mesothelioma in 2007 at the age of 31. I was told it was a deadly aggressive cancer. My doctors did not know alot about it and how to treat it. I was luckly sent to Memorial Sloan Kettering Cancer Center in NYC where I had a great surgeon. Then after surgery I became depressed and I felt alone with my disease. I was searching the web and came across the Mesothelioma Applied Research Foundation. I signed up to attend a symposium that they were having in Washington D.C. I felt so inspired after seeing all that everyone does in the foundation to raise awareness, find answers with doctors that are experts in the field. I was grateful to see what the scientists have been working on to find better treatment options for patients and their endless search to find a cure. I got to meet more patients then I thought existed. We are all a big family, I look forward to seeing them every year at the advocacy events and symposiums. Most of all I went from being angry to being empowered. I learned I alone can make a difference with advocacy and fundraising for the foundation. Its a wonderful needed support group that has amazing people working that really cares for us.
Photos
More feedback...
How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
2 people found this review helpful
July 30, 2009
2 people found this review helpful
Where do you turn when you've diagnosed with a deadly disease you can't even pronounce? The Mesothelioma Applied Research Foundation Inc., helped by dear childhood friend by providing her and her family with up-to-date research materials, treatment options, an incredible support system and hope.
More feedback...
If this organization had 10 million bucks, it could...
Educate all lawmakers and the general public about this insidious disease.
When was your last experience with this nonprofit?
2009
1 person found this review helpful
July 24, 2009
1 person found this review helpful
My husband was diagnosed December 31, 2001 with meso at the young age of 39. We were told the same by our local physician, get your affairs in order, travel to Europe etc....you have 6 to 8 months to live. I immediately hit the internet that New Year's Eve night and located the Meso Foundation. Left them a message and received a call from Chris Hahn, the Executive Director that January 2, 2002. I contribute that initial contact to my husbands' survial of 5 years. He succumbed to the disease December 21, 2006 at the age of 44. The outstanding caring, knowledge, assistance this foundation has given my family is beyond words. My heartfelt thank you and gratitude to this wonderful organization.
The Great!
I've personally experienced the results of this organization in...
my own personal experience and I see the results everyday with the current victims and their families.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
is their caring for all. Their compassion to help in all aspects of finding a cure, helping the victims and their families get the best possible care, and to assist them in coping.
The kinds of staff and volunteers that I met were...
one word, OUTSTANDING.
If this organization had 10 million bucks, it could...
assist in research to find the ultimate, a cure. To assist victims and their families in medical costs, travel and housing at a medical facility that specializes in meso, which these facilities are far and few between.
When was your last experience with this nonprofit?
2009
1 person found this review helpful
July 24, 2009
1 person found this review helpful
MARF is THE key Meso resource to patients, caregivers and the scientific community! It is there to help, guide, educate and provide support and research resources!!!
The Great!
I've personally experienced the results of this organization in...
helping patients, driving to a cure, enhancing treatment, assisting in QOL and being an advocate!
Ways to make it better...
If I had to make changes to this organization, I would...
More feedback...
The kinds of staff and volunteers that I met were...
WONDERFUL!
If this organization had 10 million bucks, it could...
Save lives!!!!!!!!! Do more of what it is already doing!
Ways to make it better...
Grow bigger and stronger!
In my opinion, the biggest challenges facing this organization are...
The disease is still very unrecognized across the medical community.
When was your last experience with this nonprofit?
2009
1 person found this review helpful
July 24, 2009
1 person found this review helpful
After a 2 week stay in the hospital, my husband was diagnosed w/pleural meso in March of 2008. He was only 51. The pulmonologist told us to go home & get our affairs in order. Of course, we didn't do that but started on a chemo regimen with a local oncologist. It has been 16 months & we've had our ups & downs with this horrific disease. The day of the diagnosis, I got on the internet & found MARF. After looking at other sites, MARF was the most informative & personable site & so started our relationship with staff, victims, volunteers, widows, caregivers and world of information to help in our fight with meso. Everyone is so caring & compassionate because they too, have been touched by this disease on a personal level. Most importantly this foundation has given us hope.
Photos
The Great!
I've personally experienced the results of this organization in...
several states proclaiming Meso Awareness Day on Sept. 26th.
Ways to make it better...
If I had to make changes to this organization, I would...
more MARF locations throughout the country for local network.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
the friendships I've made and the knowledge learned from caring & compassionate people.
If this organization had 10 million bucks, it could...
be closer to finding a cure for mesothelioma!
Ways to make it better...
ALL our family had computer knowledge to share in this wonderful organization called MARF!
In my opinion, the biggest challenges facing this organization are...
funding for research & cure; awareness not only to the public but our national leader & all under him!
One thing I'd also say is that...
no matter what time of day, you can find comfort & hope at MARF. BELIEVE IN A CURE!
When was your last experience with this nonprofit?
2009
1 person found this review helpful
July 24, 2009
1 person found this review helpful
The Mesothelioma Applied Research Foundation (MARF) or Meso Foundation as it is commonly known looks after the interest of patients and families that are victims of this deadly but preventable disease. As there is virtually no research funded by the government or by any other groups the available treatment arsenal hasn’t changed much over the last 30 years contrary to the progress seen in eg Breast, Colorectal, Non-Hodgkin’s lymphoma, and Multiple Myeloma to mention just a few malignant diseases that have seen the impact of newer treatment modalities. The other side of Mesothelioma is the money, due to the asbestosis litigation which makes every patient a potential gold mine for those few law firms that are selected to represent the patient. Thus, there is a lot of advertisement from respectable and less respectable trial attorneys trying to attract a potential client. For a person with a newly diagnosed deadly malignant disease, with a name you can hardly pronounce, it’s not an easy task to navigate the turbulent waters of the excessive but not always necessary information flow. No wonder patients and families feel lost and confused in a time of significant stress and chock. MARF was founded to be a non-biased support group, initially helping patients with the information flow, supporting patients who can ill afford to travel for a consultation with the few and far apart clinical experts, supporting the family in difficult times and not least trying to find money for the much needed basic and clinical research, compensating for all the lost ground that the years of neglect and ignorance has caused. The Meso Foundation has as it’s ultimate long term goal to find the tools that will cure the disease and to work with other organizations to find ways to eradicate this preventable disease. As an Oncologist, Clinical Research Physician and Scientist working within the Meso Foundation finding a way to make the public, the medical community and the “government” aware and engaged in taking on the fight against Mesothelioma and reaching out to the many patients and families that are victims of this deadly but preventable malignant disease to help and support them is a noble and important task. I call on you to help me/us in doing the same, we are long overdue with dealing with this disease and you can make the difference.
The Great!
I've personally experienced the results of this organization in...
Awarding Research Grants resulting in publications in Peer Reviewed Scientific Journals
Ways to make it better...
If I had to make changes to this organization, I would...
Just continue what it set out to do, ther is so much more we can do to take the fight to the next level.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
It's the only organization dealing with this deadly but preventable disease where Patients, Families, Attoneys and Medical Doctors come together and work for the same goal hand in hand
The kinds of staff and volunteers that I met were...
great, they had insight, understanding and were engaged in a way that made you want to be one of them
If this organization had 10 million bucks, it could...
Do mucvh more, but 10 million dollar would only pay for 2 clinical trials where we may need 20 trials to make headway.
Ways to make it better...
there were more of us!!!!!
In my opinion, the biggest challenges facing this organization are...
Public ignorance, lack of donations due to the recession and loosing advocates due to the disease taking its toll
One thing I'd also say is that...
I or you could be the next victim tomorrow so we all have an interest to see that there is an influx of resources to understand, finding and getting drugs approved to treat and cure patients with Mesothelioma
When was your last experience with this nonprofit?
2009
3 people found this review helpful
July 24, 2009
3 people found this review helpful
My son was diagnosed with peritoneal mesothelioma 10 years ago, sadly before the Meso Foundation was established for the sole purpose of funding research to find treatment and a cure for this asbestos induced cancer. I have seen the progress over the past years in the ability of patients to fight off mesothelioma for longer and longer periods of time, all thanks to the Foundation's great generosity in funding promising research for treatment and a cure - its only mission. Please help the Meso Foundation end this disease by giving generously. It is too late for my son, but future victims will thank you.
Photos
The Great!
I've personally experienced the results of this organization in...
the survival rate of patients of this rare disease, all thanks to the dedication of passionate researchers whose work is funded by the vision and single-minded focus of the Meso Foundation.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
the knowledge that researchers know who their patients are and why they are working so hard.
The kinds of staff and volunteers that I met were...
dedicated beyond measure. They know no time limits, and work with single-minded focus: to find treatment, a cure and put an end to the scourge of asbestos poisoning.
If this organization had 10 million bucks, it could...
fund highly promising research that the Meso Foundation sadly must ignore because of lack of money. 10 million bucks could get us to a cure so much faster... for the sake of current and future victims. Pleae help!
When was your last experience with this nonprofit?
2009
1 person found this review helpful
July 23, 2009
1 person found this review helpful
I fully credit the Foundation with saving my life. I was diagnosed with peritoneal mesothelioma in August 2006, and was told by my local physicians that I should get my affairs in order. I found the Meso Foundation and they led me to a specialist, and I will be celebrating my 3 year survival anniversary soon. their work in research and advocacy in this field is unmatched. I am honored to be affiliated with them.
The Great!
I've personally experienced the results of this organization in...
every patient given hope, and in the emerging awareness surrounding mesothelioma and continuing asbestos dangers.
Ways to make it better...
If I had to make changes to this organization, I would...
do nowhere near the job Chris Hahn does. His dedication is amazing to me.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
their adaptability to current circumstances, and their ability to connect the patient, research, caretaker, and medical communities on a common front.
The kinds of staff and volunteers that I met were...
outstanding. I only wish there were a few more, as they are overwhelmed with the work they do.
If this organization had 10 million bucks, it could...
possibly find a cure for mesothelioma, and launch a major public awareness campain about the dangers of asbestos still in use.
Ways to make it better...
The foundation were bigger and had more visibility. Easier to find.
In my opinion, the biggest challenges facing this organization are...
$$$$$$$$, awareness, and the apathy of our own government officials in the fight to ban asbestos and fund meso research
One thing I'd also say is that...
the Meso Foundation is OUTSTANDING in its dedication to its cause.
When was your last experience with this nonprofit?
2009
July 23, 2009
My grandfather was diagnosed with mesothelioma in 2007. I found the Meso Foundation by accident through a Google search. I was so lucky. From day one, the Meso Foundation provided me and my family with loving support, advice on multiple treatment options for my grandfather, and a community that simply inspired our entire family. Without their outpouring of love and support (to a total stranger nonetheless), there is no way I could endured the process of trying to help my grandfather get well while caring for him the best I could in the process. The Meso Foundation is first class all the way. It's too bad this site only provides five star ranking. They truly deserve at least 100 stars!
The Great!
I've personally experienced the results of this organization in...
the lives of many people. Where there was no hope, now there is hope. Where there was only sadness, now there is a reason for joy.
Ways to make it better...
If I had to make changes to this organization, I would...
hire all the same staff that currently works there because they are second to none. I have full faith in Chris Hahan to run this organization so I have no desire to run it!
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
The people. They truly care about the cause of curing mesothelioma and banning asbestos. This is not just some group of people using this nonprofit as a stepping stone like some others do.
The kinds of staff and volunteers that I met were...
the most caring and giving people I have ever met. They took time for me whenever I needed it night or day no matter where they were in the world.
If this organization had 10 million bucks, it could...
fund 100 research grants that may result in the cure of this dreaded disease.
Ways to make it better...
all their hard work had already led to a cure.
In my opinion, the biggest challenges facing this organization are...
lack of awareness about the disease and lack of funding for research that will ultimately lead to a cure.
One thing I'd also say is that...
Mary Hesdorffer, the medical liaison for the Meso Foundation, is truly an angel. She has literally changed lives in so many ways and we all love her!
When was your last experience with this nonprofit?
2009
Filter by reviewer role:
- Volunteer7
- Client Served21
- Expert1
- Public15
- Board Member3
- Donor1
- Advisor0
Support This Nonprofit
Help this nonprofit get more reviews
5 tips for getting reviews