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75 Reviews
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August 14, 2014

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August 14, 2014

Gr8 organization very dedicated to the patients and families it serves!!!

Ways to make it better...

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

Get it more funding!!!

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2014

October 5, 2013
1 person found this review helpful

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October 5, 2013
1 person found this review helpful

My son was diagnosed with mesothelioma in December 2006, and died in September 2009. Between his diagnosis and his death he sought information on the nature of the disease and possible treatment options. The most useful, honest and unfiltered information he received was from personnel and contacts at the Mesothelioma Advanced Research Foundation. My son contacted the Foundation numerous times for advice on potential treatments and clinical trials, and relied on them for important guidance. He came to believe they were the preeminent source of this information, and they provided this information with a caring attitude and strong psychological support as well.
As I began to learn about the Foundation, it was apparent to me that their stated focus of guiding the patient victims and providing funds for research was more than an altruistic goal. They really live that mission. As a result I have joined the Board of Directors and committed my time as well as monetary resources to their very worthy efforts.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

July 15, 2014

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2 previous reviews - show all
October 4, 2013

As a Mesothelioma Foundation board member for the last 3 years I can't say enough about this foundation. It is the only foundation funding PEER REVIEWED medical research, dedicated to finding better ... more

July 15, 2014

The Meso Foundation has helped me as a caregiver and my husband as a patient with peritoneal mesothelioma with information and support groups through Facebook, telephone calls, symposiums, etc. They also fund much needed research for a cure. They have become a lifeline and a new community for me. Everything is also done with the utmost integrity and humanity.

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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?

2014

October 4, 2013

As a Mesothelioma Foundation board member for the last 3 years I can't say enough about this foundation. It is the only foundation funding PEER REVIEWED medical research, dedicated to finding better treatments and ultimately the CURE for this ugly disease.

PEER REVIEWED research is a
critical aspect to finding a cure. Our non paid Science Advisory Board is comprised top doctors and researchers with years of experience in Mesothelioma care. They review 50 plus research grant proposals annually and award grants based on MERIT ONLY. We are the only foundation that does that, and have given out over 8 million dollars in research grants in the past 11 years. Results from several of those grants have received additional research funding from the Department of Defense peer reviewed medical research program.

Additional services include patient, caregiver, and bereaved support groups in individual or group settings.

The Foundation Board is comprised of non paid personnel who have a personal connection to this disease, either as a caregiver who lost a loved one to mesothelioma, as a patient, as a doctor or researcher, or have a military background. One third of newly diagnosed patients have a military background.

The Foundation is directed by a nurse practitioner with over 16 years experience in treating mesothelioma patients, and is known world wide for her expertise. Her small staff works relentlessly to advance the cause to find better treatments and a cure.

Why am I so attached to this foundation? Because I believe it gives the mesothelioma community the hope we need in finding better treatments and a cure. Yes, I did say we, as I am a 7 year mesothelioma survivor.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

July 22, 2009

MARF has been a true life line for me since being diagnosed with peritoneal mesothelioma in 3/07. It is by far the best clearing house for up to date information regarding treatment centers, trials, doctors and alternatives. It has a small compassionate staff of dedicated people that I have met personally at the annual symposium. They know each of the "Warriors" and Caregivers by first name and go out of their way to stay in touch with us by email or phone. The Scientific Advisory Board is comprised of what I consider the leading doctors in the field of mesothelioma treatment and are dedicated to finding a cure. This organization gets stronger each year and is dedicated to finding a cure. The annual symposium is unique in that it brings together doctors, patients and caregivers for 3 days of information sharing, networking, and relationship building. Finally, the medical liaison found under the "GET HELP NOW" link is our standard response to all new comers looking for direction. Mary is dedicated to our growing community and is up to date on all aspects of the disease and treatments.

The Great!

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

the relationships it helps build with staff, doctors, caregivers and "WARRIORS"

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...

caring, compassionate, involved, sincere and dedicated.

Ways to make it better...

this ugly disease can be brought under control and eventually cured.

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

first getting a total ban on asbestos usage in the United States. Second raising mesothelioma awareness by pushing for 9/26 as an annual mesothelioma awareness day. Third finding major grant dollars for serious long term research towards finding a cure.

When was your last experience with this nonprofit?

2009

July 24, 2009
1 person found this review helpful

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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

July 24, 2009
1 person found this review helpful

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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

July 24, 2009
3 people found this review helpful

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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

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