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June 11, 2011

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June 11, 2011

I am the family researcher. Every family should have one, right? In 2008 my father was was extremely ill; advanced metastatic melanoma. In the process of leaving no stone unturned, I happened upon the Melanoma International Foundation website. I e-mailed Catherine Poole, President of Melanoma International Foundation, directly with some specific questions. She responded immediately, with wisdom and compassion. Her insight and the information she provided at such a desperate time will not be forgotten.

The Great!

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

The thing about the Melanoma International Foundation is that they truly serve Melanoma patients and their families. They respond quickly, via e-mail and/or the telephone, they are 100% abreast of the latest developments in Melanoma treatment, they educate so that others may get the best possible care for their circumstances, and they do all of this without compensation. They are true patient advocates.

Ways to make it better...

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

I have referred family and friends to Melanoma International Foundation. They have responded directly and with valuable information. I cannot speak highly enough of this organization. Please support this organization financially so they can keep doing what they do!

June 11, 2011

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June 11, 2011

I am so grateful to have found Melanoma International Foundation on the internet. Connecting with others who are battling this disease has helped me in dealing with my diagnosis. Also, the moderators do an amazing job of making sure that accurate information is shared. It has been a valuable tool in my education about Melanoma.
Having Melanoma experts so available and willing to respond to questions has been truly amazing. Such a comfort when facing a life threatening disease.

The Great!

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

I've become a smarter patient more able to advocate for my own care because of the information available through MIF

Ways to make it better...

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

Support it financially and help it become more easily found by others facing Melanoma.

June 10, 2011

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June 10, 2011

I found the Melanoma Foundation after just being diagnosed. I was not under general care, so was not receiving any kind of feedback from the surgeon who had removed the malignancy. After thirty days I had an appointment only to find I was being sent for further testing which they would receive within two days and I would have to wait another 30!!!! I requuested a copsy of my lab work and quicly submitted the info online to the Melanoma Foundation. Thank goodness I did! They were quick to tell me I was a low risk, and explain the results to me. Since my surgeon had zero compassion or bed side manner (this is not his specialty) and found it acceptible for me to live three months before giving me the all clear I was releived to talk/chat to other individuals going through the same thing as well as get some professional council on my results! I am happy to report that I feel I have made true friends on this website, and still communicate with some to this day. In addition I visit occasionally to lend my support to other newly diagnosed individuals. This site was a true blessing in my life at a time when it was so needed. God bless the individuals that spend their time to keep it up and runnin!

The Great!

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

I live in Canada and was feeling very lost and alone!

Ways to make it better...

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

I know of nothing I would personally change and am thankful to have found them!

More feedback...

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

How did you find this group?

Google

What, if any, change in your life has this group encouraged?

Support support support. I could post today and know I would receive support again at any time needed.

When was your last experience with this nonprofit?

2011

June 10, 2011

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June 10, 2011

My Father has Stage IV malignant Melanoma and for the past two years I have been coming to Melanoma International Foundation for help understanding the Doctor's statements, resources available, new ideas for treatments..etc
Melanoma International Foundation's community and its founder
Catherine Poole have been amazing and I am really glad that I can go there for help and support. Thank you from the bottom of my heart
Alexandre

The Great!

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

helping my Father with Cancer treatments

Ways to make it better...

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

not change

June 10, 2011

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June 10, 2011

In April 2009 my sister suffered a large bleed on her brain. A tissue sample taken during evacuation of the blood indicated melanoma. She was advised by her oncologist that there was no effective treatment and that it was hopeless. We were devastated. We never had known anyone with melanoma; in fact we knew nothing about melanoma. I moved from Washington DC to Dallas where my sister lived so I could be with her . I assumed the role of advocate and desperately tried to educate myself and find help for my sister. Eventually I found Melanoma International. Thru their webinars I learned about treatment options, what tests to ask for, and what clinical trials were available. In their forums, I connected with other families and patients fighting this terrible disease. They reached out to me with information and encouragement. They helped me thru a terrible time. Unfortunately my sister died 9 months after her diagnosis. I regret that I did not know about Melanoma International sooner; we would have pursued a different course of treatment and perhaps my sister would have survived.

The Great!

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

I knew nothing about melanoma when I became my sister's advocate and caregiver. I did not know what to ask medical professionals and I did not know how to evaluate test results and treatment options. Melanoma International gave me the information I needed to become effective.

Ways to make it better...

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

make sure that every oncologist knows about Melanoma International and informs each patient about the organization.

June 9, 2011

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June 9, 2011

At age 60 I was diagnosed with a stage 2 melanoma on the back of my neck. It threw me into a depression and anxiety I had rarely experienced in my life. I was being passed from one physician to the other in a HMO system and couldn't seem to get control of what was happening to me. I reached out to my friends on the forum and they were there for me. I benefited greatly from them through my surgery and that horrible wait to get the final results. I still gain from the site even though I am now three months from my surgery. They played a significant role in my life through this crisis.

The Great!

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

support

Ways to make it better...

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

nothing.. they are the best

June 9, 2011

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June 9, 2011

I found MIF soon after the "big C" came in to my life, during the time I was absolutely overwhelmed with the task of educating myself - and my family and friends - about the impact of melanoma on my life. From my first visit to their website I was impressed with the professional, level-headed information and knew I had found a trusted resource. I read everything and talked to everyone, however I always counted on returning to MIF for reliable and realistic information. When I needed to locate a new doctor after relocating across the country, their forum was invaluable. When I sink into self-doubt and fear starts to creep into my life again, I turn to MIF for clarification, inspiration and the feeling of support that can only come from fellow melanoma survivors. Recently I have been appreciative of being able to stay connected with the latest news about melanoma through Facebook. In short, I consider MIF to be the leader in melanoma support and education! Thank you!

The Great!

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

...the positive feedback I have received from other people via the forum and the information I have received about diagnosing, treating and living with melanoma.

Ways to make it better...

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

...feature the forum more prominently on the website. Communicating with other survivors, patients and family members is absolutely essential to living positively while on this journey with melanoma.

More feedback...

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

How did you find this group?

searching the internet

When was your last experience with this nonprofit?

2010

June 9, 2011

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June 9, 2011

Recently I was seeking urgent advice trying to understand and source treatment options for my brother who had Melanoma Stage 4. Sadly he died in January. At the time however, Catherine Poole was amazingly responsive and helpful. She was full of suggestions for treatments I could look into and the hospitals that offered them. I was most impressed and grateful to Catherine for helping me.

The Great!

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

my time family's time of need

Ways to make it better...

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

There is nothing I would change

June 9, 2011

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June 9, 2011

I am a man living with melanoma. This is the best place to get support and keep up with the very latest information. I am greatful for their efforts.

The Great!

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

Numerous questions answered and support from experts.

Ways to make it better...

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

Provide additional federal funding.

June 9, 2011

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June 9, 2011

Our son went through Melanoma treatment between 2006 until the end of 2008. I found the members and team at MIF gave us great support and advice. Catherine was able to assist by convincing BMS to get our son onto the Compassionate use of Ippilimumab even though we had passed the cut off date. The most important thing is that she showed incredible empathy as we were struggling on the other side of the world in Australia.
regards
James

The Great!

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

in receiving help as above and participating in their Forum.

Ways to make it better...

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

Give them lots of money to continue helping those with Melanoma, the most aggressive of all Cancers yet the most underfunded.

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