First Candle. With roots firmly planted in the early 1960s, the then National SIDS (Sudden Infant Death Syndrome) Foundation became known for its primary focus of supporting families who had experienced the death of a baby from SIDS. It was through this foundation that grassroots advocacy efforts were successful at securing the first national funding available specifically for SIDS research.
In 1987, forged through the merger of several national and regional SIDS groups from across the country, the SIDS Alliance was created to provide a single, focused entity dedicated to the elimination of SIDS. As a key partner in the national Back to Sleep campaign, the Alliance has been credited with helping save more than 25,000 babies’ lives, amounting to a drop of nearly 60 percent in the U.S, SIDS rate.
In 2002, the SIDS Alliance Board of Directors voted to expand the organization’s mission to include stillbirth and other sudden, unexpected infant deaths (SUID). The organization has committed its resources – both human and financial – in hopes of having a similar impact on stillbirth as it has had on SIDS. Fittingly, the organization also voted to changes its name to First Candle, to reflect its broader mission and hope for the future.
By early 2007, First Candle’s efforts were rewarded with an $11 million grant from the Bill & Melinda Gates Foundation earmarked for a ground-breaking program to help prevent infant deaths than occur as a result of unsafe sleep practices. The Bedtime Basics for Babies campaign combined a crib distribution program with a wide-spread public and professional education component and was spread over a 7-year period.
2010 brought the research breakthrough we had long been waiting for. Dr. Hannah Kinney, SIDS researcher for more than two decades, discovered that SIDS was not the mystery we once thought. It has now been linked to low levels of serotonin and serotonin receptor cells in the brain stem of babies who die of SIDS, and research continues in hopes of finding a way to identify and treat this deficiency.
Most recently, First Candle was one of the six prestigious organizations formally invited to collaborate on the NICHD’s Safe to Sleep campaign launched in August, 2012. This campaign goes beyond Back to Sleep in providing risk reduction strategies to parents and caregivers on ways to prevent SIDS, suffocation and other sleep-related causes of death.
Throughout its long history, First Candle has been saving babies’ lives, spearheading research, educating new moms and dads, and bringing hope to grieving families.
CJ Foundation for SIDS. The CJ Foundation for SIDS was founded in 1994 by Joel and Susan Hollander in memory of their daughter, Carly Jenna who died from SIDS in 1993. Realizing there was still a great need for research into the causes(s) of SIDS, support for grieving parents, and education about the newly created Back to Sleep campaign (now known as the Safe to Sleep campaign), it was evident that this would be the Foundation’s main role: to provide funding to make a difference in these areas. The grant program was established and within the first year of its existence, the Foundation awarded grants for research, bereavement support, education initiatives and public awareness campaigns to worthy institutions and organizations across the country.
It wasn’t long after the Foundations’s inception that it became known as a leader in the SIDS arena. Other opportunities to make an impact quickly presented themselves and the Foundation became more than a grantor.
As research indicated that risk reduction was possible, the CJ Foundation implemented its own education program including: the development of a national public awareness campaign, Face Up to Wake Up, in major US cities; creation and distribution of educational materials; development of an educational resource kit specific to the American Indian/Alaska Native populations; and presentations at national conferences for healthcare providers, childcare providers and educators. The need for standardized autopsies and cause of death classifications led to advocacy work at both the state and federal level. The ongoing needs of grieving families resulted in the development and distribution of bereavement materials, online support, and the hosting of national conferences for families to gather and share their grief and learn about research projects and findings.
Through these activities and the grant program, which remains an integral part of the Foundation, millions of dollars have been allocated in the fight to eliminate SIDS, Sudden Unexpected Infant Death (SUID), and Other Sleep-Related Infant Death. To this day, the Foundation remains the largest non-government funder of programs addressing SIDS and SUID.
Learn about the unification of these two dedicated organizations, bringing together their vital programs, services and resources, to continue in the fight against SIDS, SUID and Stillbirth.