March 28, 2011

Gideon Sofer

I am in a very very sad mood right now.

Some years ago in my final year of college, I read a school news article about a student battling Crohns and reached out to him out of the blue.  I was desperate to talk to someone who understood what I was going through.  I told him about what I had tried in the past, and maybe one of those would work for him, if not for me? He already knew everything there was to know and had tried everything in the book. Gideon and I corresponded back and forth over email the next semester; I would tell him about my GI issues and he would in turn tell me about the stamp project he was forging to create awareness of IBD, along with advice about diet, etc. Crohns is brutal, though it is not considered fatal. But Gideon's case of Crohns was so rare and severe that he had nearly passed away from the disease.  My issues were nothing compared to what he had gone through and was going through.  He never mentioned that in his emails but only gave me support and advice.  The only people who I had told and knew about my UC by that time in college were a few friends and family members, obviously my doctors, and Gideon.  We tried to meet for coffee but I was barely going to classes much less meeting up for coffee at that point.  I left school soon after that but remained in infrequent touch.  When my health was better, I messaged him on facebook and we caught up.  I later told him about my excitement on leaving for a health policy program in London and he asked me which one because he was also interested in health policy (he was already a champion activist in the field! Gideon was in DC dedicating his summer to making the stamp a reality!).  I told him he should join the program and he mentioned it was on his bucket list to see London and wrote more about his website, more about the stamp project, clinical trials, etc. We corresponded every so often for about a year about the progress of the stamp initiative and his website,  http://www.ibdcure.org, and how he wanted to update it, develop it more into a blog, etc.  I see the website is no longer up and if anyone has information regarding it and the project, please let me know.  Gideon later shared his op-ed which he had worked on (for 6 months!), which was published in the Wall Street Journal, regarding clinical trial practices and a specific stem cell clinical trial that he had been excited about and had given him hope before joining it the year prior.  The article is important and well-written.  

Today I went on facebook to message Gideon and catch up and instead saw his facebook page was full of condolences and love.  Gideon Sofer passed away on January 11, 2011 after a long battle with Crohns. My thoughts are with his family right now.

Gideon to me was an incredible support system to a complete stranger, and likely much more to many more, and is someone who fought his entire life for his and others. 

The only thing I can think to do right now is direct you to his story:


- I want to reiterate to anyone with IBD that IBD is not considered fatal.  I hope what you take away from Gideon's story is the incredible person he was, the IBD awareness he tried to bring particularly through his stamp initiative 'Stamp out IBD', the way he stood up in college to bring about measures for other IBD students, and the fact that he took advantage of life and lived it to the fullest as anyone should.