Editor’s Note: Click HERE to learn more about First Candle’s upcoming gala event!
For Alison Jacobson, 1997 was a hard year—it was the year her son Connor died of Sudden Infant Death Syndrome (SIDS). Though SIDS isn’t discussed as openly as many other infant health issues, it contributes to the 4,500 unexpected infant deaths that occur each year in the United States (it’s reported that there are 3,500 deaths due to SIDS and other sleep-related issues every year). After Connor’s death, Jacobson reached out to a bereaved parents group for emotional support. While she appreciated her time there, she knew she needed a support group tailored specifically to infant deaths. She searched online and found the SIDS Alliance, an early version of First Candle, a nationally recognized organization dedicated to putting an end to SIDS and stillbirths around the United States.
“When I went to my first meeting with the SIDS Alliance, I immediately felt a connection, and I knew, without even having to use words, that I was with people who felt just like I did,” Jacobson says. Nineteen years later, her journey has come full circle: After re-engaging with First Candle on a consultancy basis and co-hosting of their gala in 2014, Jacobson became First Candle’s CEO in March of this year.
First Candle began in the 1960s as the National SIDS Foundation, and acted mainly as a support group for parents affected by SIDS. The foundation later adopted the name SIDS Alliance, and is now First Candle. With a new name came a new image. First Candle “strives to get every baby to his/her first birthday,” Jacobson says. As the SIDS Alliance, the organization supported research and educational outreach (including promoting the NIH’s Back to Sleep campaign) and also gave support to bereaved families; now, as First Candle, the organization has expanded its scope to include stillbirths.
First Candle works closely with the National Institutes of Health and the Maternal and Child Health Bureau, two federal agencies that provide grant money to conduct research. This grant money, along with donations, is also used to sponsor various programs and projects to spread awareness about SIDS, stillbirth, and infant safety.
With a staff of six full-time and one part-time team members—three of whom have been directly affected by SIDS—First Candle depends heavily on what Jacobson refers to as her “army of volunteers,” which includes over 145 dedicated parents and SIDS activists, who help with tasks from outreach to peer support.
The organization is focused on education, empowering parents with the knowledge to keep their babies safe. In June, the organization participated in an event that was planned by Operation Homefront where Joseph Shamie, the president of Delta Children’s Products, spoke about safe sleep practices, and gave 75 lucky military families free cribs while First Candle distributed educational materials. First Candle is also piloting a hospital self-assessment tool that allows hospitals to determine how effectively they communicate various safe sleep and SIDS risk reduction measures to their patients. Jacobson encourages parents to proactively inform their baby’s care providers about safe sleep practices; the organization even provides literature parents can bring into daycare.
“We want to keep reinforcing this message of safe practices,” Jacobson says. “We want to surround caregivers and parents with this message. It’s been demonstrated; we will reduce the risk even further by lifting it up and screaming out the message from the rooftops.”
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First Candle’s biggest fundraising event is the annual charity gala, which the organization holds every November. This year, the gala will be held on November 3 in NYC at the Pierre hotel in New York City. The theme? “Stronger Together.” [Click HERE to buy tickets!]
“No one is immune to the potential of stillbirth or SIDS; it cuts across every demographic,” Jacobson says. She chooses to look at the gala as a day to celebrate those children who have made it their first birthday, as well as remember those who have been lost—including Connor.
“Grief is such a weird process. It ebbs and flows and comes back from time to time when you would least expect it,” Jacobson says.
Above all, First Candle acts as a support group for thousands of families who have dealt with SIDS and stillbirths, no matter how recently a death may have occurred. The organization promotes the idea of willingly discussing the syndrome—with everyone from doctors to daycare providers to parents. Jacobson stresses that the best way to reduce the risk of SIDS is to follow the safe sleep guidelines developed by the American Academy of Pediatrics—this includes a separate place for baby to sleep that only has a firm-fitting mattress and fitted sheet and is free of any loose items. “Every time before I talk to a new SIDS parent, I say a prayer to Connor. It’s the best and hardest part of my job, but it lights the fire in me, and commits me to doing this even more,” Jacobson says. “I want to offer these parents recognition that 19 years later I’m still here standing, and you will be too.”
To learn more about First Candle, visit firstcandle.org!