To the Editor:
Twenty-six years ago, I joined a club that no one wants to be a part of — that of a bereaved parent. My first-born son Connor died of Sudden Infant Death Syndrome (SIDS), something that still claims the lives of 3,700 babies every year. No one imagines that their completely healthy baby will die; they think it’s something that will never touch them. Had it not been for First Candle, I don’t know that I would have survived it.
First Candle is a national nonprofit committed to saving babies’ lives and supporting families who have experienced the death of their baby due to SIDS. In 2016, in a full circle moment, I took the position of CEO/Executive Director for the organization. We’ve since made great strides as an organization, developing community-led safe sleep programs in underserved communities, hospital trainings for nurses, hosting a bereavement conference and developing a peer-support volunteer program for grieving families.
On January 27, First Candle, along with countless other non-profit organizations, was greatly impacted by the federal freeze on grants. The headlines since then would lead people to believe that everything’s back to normal. It’s most definitely not. Yes, the memo was ultimately rescinded, but not the freeze itself. Yes, a temporary restraining order was put in place last week so that these funds could be dispersed again, but the money is still frozen.
For First Candle, a grant of more than $275,000 we have through the National Institute of Health (NIH) is still frozen. The money we counted on to do safe sleep training is in limbo, such that we’ve had to stop the program. State money is put on hold too, as it depends on federal backing. This includes grants from state departments of health for universities doing research into SIDS and maternal health.
Like thousands of initiatives covering everything from cancer research to disease prevention and more, these efforts have ground to a halt. Researchers are facing the very real possibility that they can no longer pay their staff, their labs may shut down, and for the nonprofit organizations that depend on their work, merely keeping the doors open will be a struggle.
Anyone reading this can think of a family member or friend who is dealing with chronic and life-threatening diseases and is desperate for research to continue for new treatments. Much like SIDS, it’s easy to think something like this freeze won’t impact us — until our friends, colleagues and neighbors find their lives and livelihoods in jeopardy. We’re hearing that canceling funding is needed in order to eliminate waste. Yes, there is wasteful spending in the government that needs to be addressed. But the collateral damage of this blanketed approach is crushing organizations doing important, lifesaving work.
This situation has led me to do a lot of praying and soul-searching. As I so often do, I asked my little angel Connor to give me a sign that I’m on the right path. Then, at a recent event, I had the opportunity to meet Dr. Hannah Kinney, a pioneering leader in the field of SIDS research. Dr. Kinney is who I turned to 26 years ago to explain to me why Connor had died without any explanation or indication. The fact that I was able to meet her in person, this exceptional woman who has been working on this mystery for over 50 years, was the sign I needed that I can’t give up.
To friends and neighbors in the nonprofit sector who have been impacted by this federal freeze, please know I’m thinking of you. I know that in addition to it being our mission, the work we do is also how we keep food on our table and a roof over our heads.
To those in our community, please know that now more than ever, your help is critical for charities to continue their important work.
Alison Jacobson,
CEO/Executive Director
First Candle
For more information about First Candle and to donate, visit the First Candle website. Contact the nonprofit organizations you support to see if they need assistance at this time.