Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
65 Reviews
1234.923085
| 1 2 3 4...7 |
Write A Review
July 24, 2009
1 person found this review helpful

more

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

more

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

July 24, 2009
1 person found this review helpful

more

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

July 24, 2009
1 person found this review helpful

more

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

more

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

July 23, 2009
1 person found this review helpful

more

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

more

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

July 23, 2009

more

July 23, 2009

My diagnosis of mesothelioma was a shocker. Trolling the internet for information turned up MARF--a source not only of information but also of hope. Even though I had been to a major cancer center for a second opinion, I had been offered nothing but symptom treatment. MARF showed me the way to one of the few medical centers that actually treat mesothelioma. The staff has been extraordinarily supportive and the organization's work continues to offer hope.

The Great!

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

the chat line where patients and caregivers share to an extraordinary degree.

Ways to make it better...

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

do just what it is doing: provide support and counsel; beat the drums for a ban on asbestos in the USA; keep up the call for research funds into treatment and cure of this disease.

More feedback...

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

support, validation, quick response to questions and concerns.

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

the entire staff -- the medical professional who provides information, the lawyer who works to raise funds, the people who steer advocacy issues, the webdesigner. Everyone.

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

fund more research and generate more interest among researchers.

Ways to make it better...

MARF had the money to fund significant research on this disease.

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

the mysterious reasons why asbestos is not yet banned in this country. Why?

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

without MARF, I would have had no hope of a future.

When was your last experience with this nonprofit?

2009

July 22, 2009

more

July 22, 2009

This is a great foundation with purpose. It has helped many families that are going through an unbelievably tough time. Trying to provide answers, where there are none. Trying to provide solutions, where they are needed. They have played a very influential role in members of my families lives. We all appreciate everything they have done.

The Great!

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

My family. They were there for my uncle and his family as he battled Meso.

Ways to make it better...

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

Stay the course.

More feedback...

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

They have tried there best to help all that are influenced by this disease.

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

Kind and had big hearts.

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

Ask for more. I'm sure it would help all parties involved, but it will take more than that to reach the true goal. A cure!

Ways to make it better...

Nothing could make the experience better.

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

Lack of government help. The politics involved in trying to save lives, are overwhelming.

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

My family is better off because of this organization. My uncle may not have survived, but his journey was improved thanks to them.

When was your last experience with this nonprofit?

2009

July 21, 2009

more

July 21, 2009

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.

The Great!

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

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

Ways to make it better...

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.

More feedback...

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?

2009

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers