We’re honored to announce we’ve partnered with the Boomer Esiason Foundation to help people living with cystic fibrosis (CF) realize their dream of building a family. The Boomer Esiason Foundation is dedicated to heightening awareness, education, and quality of life for those affected by CF, while providing financial support to research aimed at finding a cure. Today they launched the BEF IVF Program to help people access fertility care through Kindbody. Accessible, equitable, and affordable care is our guiding light for all of us at Kindbody and we could not be more proud of this partnership.
The inspiration behind the BEF IVF program is Gunnar Esiason, the son of former NFL quarterback Boomer Esiason, who is well known for his lifelong battle with CF and his tireless efforts to advocate for, and improve the lives of, people living with the disease. Gunnar and his wife Darcy are new parents to their son Kaspar– a milestone Gunnar grew up believing he would never achieve. That’s because, until recently, people living with CF didn’t reach adulthood let alone become parents. But over the past decade, a handful of medications have come to market that have turned the disease into a manageable ailment for many patients. Unfortunately, the disease causes infertility in most, creating another hurdle for CF patients who wish to become parents. Gunnar and his dad Boomer set out to help more people living with CF build their families with world-class fertility care through Kindbody. Our Chief Genomics Officer Dr. Amber Cooper sat down with Gunnar and his dad to learn more about Gunnar’s story and why this particular program is so meaningful to them both.
It’s a pleasure to sit down with you today. I know it’s not lost on any of us that a decade ago we may not have had this conversation. Would you share more about the Boomer Esiason Foundation and how it was founded?
My parents founded the Boomer Esiason Foundation in 1993 not long after I was diagnosed with cystic fibrosis. The Foundation has really evolved since it was started to meet community needs in the here and now. Aside from contributing to cystic fibrosis clinics and research initiatives, we have a number of financial assistance programs that support CF families through all stages of life. The CF community is going through a rapid period of change thanks to some remarkable medication breakthroughs over the last several years and now we’re committed to making sure patients and families have what they need to be successful well into adulthood and into the future. When I was diagnosed, CF was considered a childhood disease. Today it is anything but that, and it’s been wonderful to play a small role in seeing that through.
I’ve heard you describe the inability to start a family as “salt in the wound” of living with CF. Tell me about your fertility journey.
Cystic fibrosis is such a complex condition that is an incredible burden for patients and families to carry. The care routine alone, while much easier today, has historically been hours and hours long per day. Now that we’re living in a time when the vast majority of patients are seeing the benefit of incredible medications and are pursuing the kinds of things that most people get to enjoy in life – school, work, social lives and anything else – it’s just incredibly frustrating that infertility is one more thing a lot of us have to deal with. I actually learned about my infertility from a Facebook group well before I was mature enough to understand the implications of it. It was terrifying and sort of hung over me like a cloud for a long time. Only years later, when I was much older did I understand what my path to having a family would need to look like, and even then it was hard to get answers from CF care providers about nuanced details around genetic testing, sperm extraction and preparation. We actually turned to other people with CF as a key resource.
Why is it so important for you to launch the BEF Program?
The cost of living with a rare disease is significant. Every single dollar spent has a magnifying glass attached to it, and while my wife and I were able to afford fertility treatments, we want to be sure that more people with cystic fibrosis can, too. The joy that our family felt when my son arrived is the same kind of joy I want other families to feel. People with CF go through so much in their lives – it means a lot to us if we can help them find fulfillment even in the face of huge obstacles.
What is your wish for this program? Five years from now what would you like to achieve?
It’s simple. I want to see an entire new generation added to our cystic fibrosis community — that is children born to people who have survived a lifetime with this disease.
Your story is truly inspiring and this program will help so many people. Thank you Gunnar and Boomer for the opportunity to help people with CF realize their dreams of becoming a parent.
Learn more about the grant here!