MELANOMA INTERNATIONAL FOUNDATION
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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
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?
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
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
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
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
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
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
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
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
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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