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July 13, 2012

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July 13, 2012

Faced with learning I just became Stage 4 Metastatic Melanoma in December 2009 with the doctors telling me that surgical 'treatment' was no longer an option and I needed to enter a clinical trial if I had any hope of "continuing on" I set out to find assistance from a melanoma specific cancer navigating organization (as my Oncologist Surgeon and Hematologist Oncologist and their 'support' staffs left me on my own to fend for myself in learning about clinical trial options, how it all worked, etc.) I was very fortunate to have found Melanoma International Foundation's website with a huge amount of reliable and current information that was well organized. I also called the offices with some of my questions and was promptly answered by a very helpful, 'live' person, and even though it was 5PM (and on a Friday) Catherine Poole stayed on the phone with me for about half an hour answering all of my questions with patience, compassion, and very detailed knowledge about melanoma treatment options including the mechanics of navigating the maze of steps needed to get into a clinical trial. This is a genuine comment: That I definitely credit Catherine and the Melanoma International Foundation in part that I am still alive (and thriving :) !!) 2 1/2 years later, for to be on one's own to wade through all of the info that is available online when an internet search turns up thousands and thousands of information bytes (only some of which is reliable, much of it is outdated, and all of it is confusing...) is not how to proceed. And in the past 3 years I have yet to find another source, either online or in print, that comes any where near to being as vast and helpful.

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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?

2012

July 13, 2012

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July 13, 2012

As a nurse practitioner and Stage IV melanoma patient, the MIF forum has been extremely beneficial to me, and I am certain it has provided resources to many others. This forum, as opposed to some others, is monitored by personnel with knowledge about the disease. As a medical professional, it drives me crazy to see myths and falsehoods promulgated as valid treatment options on other sites. This site requires that information posted be evidence based. Additionally, I have made personal contacts, who, while I have never met them in person, are now my friends and supporters as I traverse this strange Melanoma Never-land. Hopefully, it has even allowed me to help others when I post information that I have been in a unique position to provide as a medical provider and patient in a phase 1 trial. It is a valuable tool for patients and their families in search of support and information.

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How would you describe the help you got from this organization?

A lot

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

July 13, 2012

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July 13, 2012

I found the Melanoma International Foundation forums after I was diagnosed with melanoma last year. I didn't know much about the disease and was scared. The information on the forums, the website itself, and the support that was provided was amazing and instrumental to not only my mental well being, but also provided me with the questions I needed to ask my healthcare providers. I feel a great sense of relief that MIF continues their educational efforts and that their forums are still maintained and hope that other melanoma patients are aware of this amazing resource. Thank you MIF for all your help!

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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?

2012

July 13, 2012

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July 13, 2012

When I was diagnosed with Melanoma I went looking for answers. I foud MIF during my search and was surprised by the amount of information and especially support you can get from others in your situation. They are a great resource no matter what stage you are in or if you are simply trying to help a friend or relative. I learned a lot from their forums and felt so much better after reading what they and others on the forums had to say about my and their concerns, problems and treatments.GThey helped me tremendously.

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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?

2012

July 13, 2012

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July 13, 2012

I live in Australia and was diagnosed with Melanoma to the Lymph Nodes (right Axilla). Being given that news is frightening. I had previously had a Primary Melanoma removed 3 years earlier and none of the experts could believe it had spread. The primary was caught very early. With the shocking news that my life was now threatened everything becomes confusing. You search the net, listen to surgeons and oncologists, look at alternative therapies. One of the calming sources was a visit to the MIF website and reading their personal accounts of survival. It was inspiring. I also emailed the Foundation with questions and received a very prompt reply that was very helpful. I am currently Melanoma free and intend staying that way. A special mention to Herman for his story as I found that the most inspiring. Thanks for being there in my hour of need. Peter Mawer

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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?

2011

July 13, 2012

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July 13, 2012

I was diagnosed with melanoma last year for the first time in July and again (2nd primary site) in August. According to the doctor, it was all very rote - but melanoma is deadly and so much can go wrong. I was terrified. Worse, no one around me really understood. I found the forums at the Melanoma International Foundation and it was like finding a life line. Here were people who not only understood what I was experiencing but who could offer really sound advice. I trust what is posted there because I know that medical professionals are reading there too. What I've read there has helped guide my relationships with my own doctors as well as helped me deal with the diagnosis.

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

July 13, 2012

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July 13, 2012

I was diagnosed with an early stage melanoma three years ago. I was nervous and scared. I knew very little of melanoma and went on the internet to find out more. I needed answers to all my questions. I found MIF and started reading the forums. Although that alone was informative, I really wanted to know more about how I should view my own situation. So I posted a new topic on the forum. I received many responses, including a few from Catherine Poole. I cannot say enough how important it was to me to hear others stories and the words of encouragement regarding my own post. This is a serious disease and can mentally destroy someone, but this website gave me a much better outlook, a sense of relief, and most importantly, strength. The togetherness of the people on MIF provided the support I needed to look forward to the rest of my life and taught me to be strong in the face of adversity. The site has many wonderful things to help those that suffer from melanoma by way of forums, links, latest research, and the common bond of immediate friendship. I would not be where I am today without the information and voice of reason MIF gave me. I highly recommend this site to anyone wanting to learn more or needing that shoulder to lean on. Thank you to everyone at MIF for the dedication and support in fighting melanoma. It will never be forgotten.

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?

2010

July 13, 2012

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July 13, 2012

Dr Wong has been attentive, e.g. ordering scans when symptomatic of possible reoccurrence.

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How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Likely

How do you feel you were treated by this organization?

Quite well

When was your last experience with this nonprofit?

2012

July 13, 2012

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July 13, 2012

I was diagnosed with a late stage melanoma on June6, 2005. At the time, my prognosis was dismal and I was given 6-9 months, 12 months at best. In spite of that, I just celebrated my seventh NED anniversary last month.

Many people still see melanoma as “just skin cancer” and do not know
that it is an incurable, and way too often, fatal disease. I consider myself an “odds beater” and feel that because of my unexpected survival, I have a responsibility to educate others about melanoma. So I try to educate (without “preaching”) anyone who will listen to the dangers of melanoma.

To those who have already been diagnosed, I share my story and tell them not to view their prognosis in terms of statistics because I have never believed that I am a number, I am a person. Also, it is important to never give up hope and to surround yourself with supportive, loving people because this is not something you can face alone. I truly believe that my good fortune is the result of exceptional medical care along with hope. No treatment plan by itself can produce positive results. I believe medicine must be combined with plenty of positive energy.

Had I given up and just waited to die I would have missed so much, my daughter’s graduation from college, the marriage of my son to a wonderful woman, the birth of my first grandchild, my 35th wedding anniversary, the chance to make many new friends, and otherwise ordinary daily events that make life so precious.

In the early years of my diagnosis, I received a fantastic book at no charge from MIF, authored by Catherine Poole through my participation in an online patient support group for anyone dealing with melanoma. I thought it was just wonderful that your organization made this available to me without any money changing hands.

I think so highly of MIF that I am nominating them for an annual donation made by my daughter’s employer. Each year they pick a not-for-profit organization that is located close to DC and is small enough for them to feel their contribution can really make a difference. Although I missed the deadline in 2011, you can be sure I will not miss it this year!

Thank you for helping me with my mission to increase melanoma awareness and my personal feeling that one should not let melanoma rule your life…you rule your life while remaining hopeful and diligent. I appreciate this opportunity to express my appreciation for your organization!

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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?

2007

July 13, 2012

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July 13, 2012

I was diagnosed mith malignant melanoma. I had surgery after fighting with the insurance company. I did not know what I was getting into. The only thing I knew was that melanoma was deadly. After my surgery, infections and reccuperation from 18 lymph nodes removed. I entered a clinical trial. Unfortunately, I did not get the trial drug, but got the other more toxic drug. After talking with the foundation and getting a better of sense of my options and the positives and negatives, I chose not to go with the interferon. I am now 9 months cancer free. I hope I made the right decision, only time will tell.

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?

2011

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