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Diane

I was a General Member of the Public & Wrote my lawmakers.

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07/29/09


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.

The Great!
  • If this organization had 10 million bucks, it could... Educate all lawmakers and the general public about this insidious disease.
Ways to make it better!
  • In my opinion, the biggest challenges facing this organization are... Totally banning asbestos

Wendy

I was a Board Member & I assist the Foundation with my experience of the disease.

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07/24/09


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 seen the results of this organization in... my own personal experience and I see the results everyday with the current victims and their families.
  • 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.
Ways to make it better!
  • If I ran this organization, I would... contine the direction the Foundation is currently going.
  • In my opinion, the biggest challenges facing this organization are... funding.
  • One thing I'd also say is that... they are here and ready to help at a drop of a hat. They stand behind the victims and go that extra mile.

Darcy

I was a Client Served & My parent has meso and is very involved with patients and others and MARF is a great resource!

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07/24/09


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 seen the results of this organization in... helping patients, driving to a cure, enhancing treatment, assisting in QOL and being an advocate!
  • 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!
  • My experience would have been better if... Grow bigger and stronger!
  • In my opinion, the biggest challenges facing this organization are... The disease is still very unrecognized across the medical community.

kimbabbles

I was a General Member of the Public & I am caregiver to my husband & use the advice & suggestions I find at MARF. I've developed friendships with many Meso Warriors.

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07/24/09


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.

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Samual & Pappaw

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Nicholas reading to Pappaw

The Great!
  • I've seen the results of this organization in... several states proclaiming Meso Awareness Day on Sept. 26th.
  • 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!
  • My experience would have been better if... ALL our family had computer knowledge to share in this wonderful organization called MARF!
  • If I ran this organization, I would... more MARF locations throughout the country for local network.
  • 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!

ujungnelius

I was a Board Member & Initiating clinical studies in Mesothelioma

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07/24/09


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 seen the results of this organization in... Awarding Research Grants resulting in publications in Peer Reviewed Scientific Journals
  • 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!
  • My experience would have been better if... there were more of us!!!!!
  • If I ran 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.
  • 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
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