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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.

June 9, 2011

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June 9, 2011

We have greatly benefited from the Melanoma International Foundation website. I was able to get all the latest research information when my mother was first diagnosed. I found an article on a particular clinical trial and connected her with a wonderful doctor. We have viewed several webinars which have allowed us to hear a doctor's perspective on a drug or treatment option before going through the long process of eligibility tests and screenings. I am so thankful for this foundation. It is truly a blessing for me and my family. My mother is doing really well for her stage of disease and has been diagnosed for almost a year! The information we've received from the website may have played a crucial role in her present condition.

The Great!

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

My mother has been able to participate in all the latest research and clinical trials.

Ways to make it better...

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

I can not think of any changes I'd make.

June 9, 2011

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June 9, 2011

After being diagnosed with melanoma in 2007, I found MIf after having seen so much mis-information on the web and even from the medical comunity. MIf has provided clarity on the options availble and the the truth about melanoma. Through the information from MIF I have taken the approiate steps need to help ensure my longterm survial.

The Great!

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

Treatment of melanoma

Ways to make it better...

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

None

June 9, 2011

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June 9, 2011

My father was diagnosed with Melanoma in early 2009 in China. As Melanoma is relatively rare disease in China, few doctors and pateint communities know about this disease not to mention the effective treatments. We felt very powerless, confused and helpless at the beginning. We turned to Melanoma International Foundation founder Katherine Poole for help after reading about her book about Melanoma in China. Katherine and her foundation community are very kind and helpful. They offer valuable information, provide guidance, even go to the great length to educate doctors in China about the pros and cons of various treatment options. Their help and online service really enpower the patients in China and around the world.

The Great!

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

helping my father understand better about Melanoma and making informed decision about the treatment path.

Ways to make it better...

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

promote this foundation to more melanoma patients around the world

June 9, 2011

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June 9, 2011

Melanoma Survivor-Stage 3. I have turned to MIF many times for information and I have found that their Web site is the most accurate and up to date. Their hosted bulletin board allows you to connect with other patients and caregivers while still providing accurate information.

The Great!

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

I have learned about my diagnosis. I have learned about possible treatments. I continue to follow medical advancements. I connect with fellow patients.

Ways to make it better...

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

add the ability to sort discussions by date it was originally added to the bulletin board.

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