LifeRaft Group has been there every step of the way with me as I learn about this rare disease and explore my treatment options. They're an invaluable resource for patients navigating the confusing space and a critical source of information for caregivers.
Being diagnosed with a rare cancer is hard. Finding out there is no treatment for that cancer is worse. Suffering from unrelenting, inexplicable side effects is enough to drive you insane.
Finding Life Raft Group made all the difference. Within hours of registering with them online, they helped me find a specialist who understood GIST and Carney Stratakis. They were politely insistent that my oncologist wasn't enough and consulting with an expert was the single most important thing I needed to do. They were right.
Since finding them, I'm still sick. I still fight nausea waves and pain. I'm still more fatigued than I want and still freezing cold all the time. But I'm never alone - and that's made all the difference.
People say it all the time, but I literally don't know what I would do without them.
Finding Life Raft helped me understand my diagnosis of GIST and led me to a world renowned expert in Sarcoma and GIST. I was on a sort of "fool's paradise" thinking that GIST was no big deal... through Life Raft I learned of the importance of mutational analysis, the importance of finding a GIST specialist, and targeted therapy. Recently, when a close family member was diagnosed with Sarcoma, I was able to help -with the knowledge I gained through Life Raft. This organization is not just a Life Raft for those of us adrift in a sea of misinformation but truly a life saver for many.
being diagnosed with a rare form of cancer can really be a shock, I had never heard of GIST. without the resources provided by the Life Raft Group I would not have known anything about this disease or had any support moving forward. It truly is as the name implies - a life raft - for people floundering around looking for answers, support and comfort.
The Life Raft Group has been an invaluable resource for my family. My husband is the type of person that has only had 1 or 2 sick days his entire life so it was a sucker-punch to find out a recent tummy ache was something more serious. There is little valid information available online, most books are outdated or erroneous and obviously can't keep up with the latest discoveries (it seems to be changing weekly), even those with the GIST disease on social media get many "facts" really wrong. Our primary source has been Life Raft's social media site and their referenced research white papers - they're amazing. Even the doctor's are impressed how well informed we are with the latest studies and thoughts. A big thank you to this group!
I was diagnosed with GIST, had surgery to remove part of my stomach with the tumor and started on Gleevec in 2011. As this is a rare cancer, few people (professional and non professional) had much knowledge about the cancer, let alone about the treatment. The Life Raft Group has given me more information about my cancer than my oncologist ever did. They have always been available to answer my questions, to help me deal with my cancer and to just be there for me and my family. They have a conference every other year for us so we can keep up on the latest developments, information and so we can meet others who have the same cancer as I do. I have appreciated all the help, knowledge and understanding given by all of them. Without the Life Raft Group, many of us would probably not be here today. When a cure for GIST is found, I know it will be made possible because of the Life Raft Group. I am very proud to be on their team.