In 2019, Lindsey joined the SETBP1 community after her son, Corey was diagnosed with the disorder at just 7 months old. With him being one of the youngest diagnosed, she knew she needed to lock arms with the other families to navigate this new journey she found herself on. Immediately, she got to work connecting with other families, hearing their stories and finding new ways to spread the word about our small community.

Her goal in joining the SETBP1 Board is to help spread awareness for SETBP1 and provide support to the family’s of these amazing kiddos. It was a very challenging time when they received their SETBP1 diagnosis. “We could not have weathered this storm as well as we did without the support of our SETBP1 community”, says Lindsey. Her hope is to be the light for other families that are experiencing this pain and that with perseverance, brighter days on are on the horizon. Our kids are remarkable and they will accomplish so much with our help.

Lindsey and her husband, Michael, live in Omaha, NE with their daughter, Olivia, and son, Corey. She studied at the University of South Dakota where she obtained a Bachelor’s degree in Marketing with an emphasis in Contemporary Media & Journalism. She is now working in Sales with LinkedIn.