In many communities in the U.S., one can barely walk down the street of a downtown area, pass a public bulletin board or open a local newspaper, magazine or news website without seeing ads for awareness ribbons, buttons or bracelets or fundraising events for this or that health condition. IBS is usually not one of them, even in April, which has officially been Irritable Bowel Syndrome Awareness Month for many years. Mostly, unless one is paying close attention to certain IBS websites, April looks like any other month of the year.
In December 2010, one young woman, Jessica L., a family member of several people with IBS or other functional GI disorders literally stepped forward to run a marathon on behalf of IFFGD’s research fund. Since then, through the IFFGD’s Digestive Health Alliance, a few other community fundraising and awareness events have taken place or are planned in different states. This is welcome progress, but is a fraction of the work ahead of the IBS community on both fronts.
People who are familiar with the workings of not-for-profit organization development, at least in the U.S., can make more complex observations based on careful readings of financial data available to the public through sources like Guidestar, but suffice it to say that people with IBS historically have a poor track record of supporting organizations that are supposed to be working our behalf.
On a very grassroots level, as of today, a Facebook Cause called “IBS Research” started by one person with IBS over 2 years ago has raised $85 from 3 donors. A different fund recently started by the Irritable Bowel Syndrome Self Help and Support Group, a worldwide IBS online forum which claims over 43,000 registered members, has raised $255 from 4 donors, 2 of them well known IBS professionals rather than IBSers.
The worldwide economy is undoubtedly bad, but this was the case for IBSers in better times as well. It is true that many people with IBS are not employed, sporadically employed or underemployed for their credentials. Some of us face tremendous expenses for conventional medical care, an ever changing array of complementary or alternative medicine, non-prescription medications, supplements and extra personal hygiene supplies not generally covered by insurance, if one has any. However, similar challenges often face people with disabilities in general. According to the National Organization on Disability, a U.S. not-for-profit focused on employment, “79% of working-age Americans with disabilities …are not employed”. Yet, in contrast to the paltry sums quoted above for IBSers, the Facebook Cause for the American Association of People with Disabilities, which focuses broadly on several areas of equal access for the disability community, has raised $6800 from 196 donors. The Facebook Cause for the National Fibromyalgia Association, one of many organizations that, in part, supports research into this chronic pain disorder, has raised $8469 from 248 donors. Fibromyalgia commonly overlaps with IBS, can be debilitating to many, and is often similarly misunderstood, so stigma cannot be the only factor holding IBSers back. These amounts are still very small in terms of overall philanthropy and do not represent every donation made to each organization from every source. Still, must the number of donors for each of these 2 example IBS funds remain a single digit while posters on various forums continue to complain that researchers and politicians don’t pay attention to us?
At least in the U.S., it is important for charities and researchers to be able to show outside funding sources and policy makers broad support from their own constituency, whether it is a health related organization or a university alumni association. It is a reality of the world that money speaks. If we do not support our own, why should anyone else?
IBS Impact itself is neither a business nor charity. The expenses of keeping the main website running and ads off this free blog are donated by the IBS Impact founder and webmaster, both of whom are people with IBS of relatively modest means. This is a conscious decision in order to discourage miracle cure spammers and establish our credibility within the IBS community. Philosophically, we do encourage IBSers to support financially the organizations or research centers of your choice Many, in 4 countries, are linked on various pages of the IBS Impact main site. For those who really cannot give directly, there are several sites that direct corporate money from online merchants to charities of your choice at no extra cost, such as Good Search /GoodShop in the U.S., iGive for U.S. and Canadian residents, and Everyclick for those in the U.K. Even small amounts can add up if there are many individuals with a consistent commitment to change.