From the financial records we have been able to find, it appears the US Government spends a total of $23.8 million per year on SIDS related projects. The bulk of this funding ($23 million) comes from the National Institute of Health’s (NIH) National Institute of Child Health and Human Development (NICHD) for the purpose of medical research either directly or indirectly related to SIDS.
The NIH has an impressive website listing where their research money is spent each year. The NIH site not only shows how much was spent on SIDS research projects, but also how much was spent on other significant medical problems like cancer and diabetes. Here is a link to this page on the NIH website.
As figure 1.1 above shows, at $23 million per year, funding for SIDS research ranks 181st on the list out of 233 categories. It is important to note that these categories are not mutually exclusive. For instance, the money spent on SIDS research might also be counted in other categories. Other notable research potentially related to SIDS includes $286 million (#80 on the list) for Infant Mortality related to Low Birth Weight, and $3,277 billion (# 13 on the list) for Pediatrics research overall.
Other Funding Sources
In addition to federally funded research, nonprofits like ours also contribute money to fund research projects. It is difficult to gage exactly how much in aggregate all nonprofits contribute to SIDS related research, but it is reasonable to assume the amount is less than 5% of what the US Government spends.
The two largest SIDS nonprofits in the US are the CJSIDS foundation and First Candle. According to their 2009 financial statements CJSIDS spent $533,475 1 and First Candle spent $261,832 2 on research for a combined total of $795,307 (3.5% of what the US Government spends). Based on what we know of other SIDS nonprofits we are unaware of any other groups who come close to what CJSIDS and First Candle have been able to do.
The March of Dimes is another impressive nonprofit organization. While not specifically focused on SIDS, the March of Dimes is more broadly focused on reducing overall infant mortality and researching problems that threatened the health of babies. According to their financial statements (see page 34) the March of Dimes spends about $30 million dollars per year for what it calls “research and medical support.” Given the focus of the March of Dimes we think it is likely some of this research may indirectly help solve SIDS, but it is not clear to us that the March of Dimes sponsors any research specific to SIDS or SUID. It appears most of their focus on SIDS is to support community based safe sleep awareness, and related professional educational efforts.
Smaller but Important Dollars
Given the facts, it might be tempting to question why nonprofits should even bother contributing money to support medical research. What we have found in talking with doctors who do research is that there are often expenses faced by the labs that are insufficiently covered by large grants for research projects. For instance the lab faces cost for consumables, equipment, and support personnel that can make the research facility more efficient and effective. Our strategy at BabyWill.org is to target the small amount we can contribute to specific researchers in a flexible way so our funds can be used to fill-in these important gaps larger grants do not cover.