I recently started getting involved with the Crohn's & Colitis Foundation of America (CCFA). They're a non profit organization. They seem genuinely focused on finding a cure for all things IBS.
Check out their website at: www.ccfa.org. They have tons of information about their research, events, and community outreach programs. The BEST part is that most of the people involved either have IBS or know someone that does. This tells me that that they work that they do comes straight from the heart. (Ah! I know... I couldn't say it any other way without sounding CORNY!)
But seriously, if you guys live in the USA, its worth checking out. If you live outside of the USA, search the internet for something similar. I heard that Canada has their own non profit organization for Crohn's & Colitis, so there may be others available.