Meet Our Team

Board Members

Jeanna, President of Edwards Syndrome Association
Jeanna Polacek, President Jeanna@edwardssyndrome.org

Jeanna Polacek hails from Illinois and is happily married to Robert. Together, they are blessed with two lovely daughters, Madison and Mia. Mia is diagnosed with Edwards’ Syndrome/Trisomy 18. She pursued her education at Augsburg University in Minnesota where she played hockey and earned a degree in Criminal Justice. She later pursued a paralegal degree and worked in the domain of immigration law for a prominent drug company. Following the birth of her second child, Jeanna discontinued work to co-found the Edwards’ Syndrome Association and work towards bettering the lives of medically complex Trisomy 18 families. Currently residing near Chicago, she loves exploring new places, camping, and indulging in her passion for hockey. She aims to instill a sense of hope in families with children diagnosed with Edwards’ Syndrome, despite its difficult prognosis.

Vice President, Kelly
Kelly Peterson, Vice President Kelly@edwardsyndrome.org

Kelly Peterson is a Maryland native whose life journey has led her to become a champion for those with Edwards’ Syndrome/Trisomy 18, a genetic condition that affects many individuals. Kelly’s impressive background includes extensive experience in disability, education, and the medical field. She obtained a degree in Early Childhood Education and achieved certifications as a CNA/GNA/PCT. Her career path encompasses 15 years in Education, followed by her work in helping clients acquire disability benefits before transitioning to the medical field as a Telemetry technician for five years. Kelly’s personal experience growing up with a severe heart defect inspired her to use her vast knowledge in the field to become an outspoken advocate for her daughter Emma, who was diagnosed with Mosaic Edwards’ Syndrome at birth. Kelly’s goal through the ESA is to transform the medical perception of this diagnosis into a more positive and hopeful one. Her hope is to extend her skills and experience to help other families and children affected by Edwards’ Syndrome.

This is Robert and he is the Finance Director
Robert Polacek, Director of Finance Robert@edwardssyndrome.org

Robert Polacek shares the same goals for the Edwards’ Syndrome Association as his wife, Jeanna.  With their first daughter being diagnosed with Edwards’ Syndrome shortly after birth, both felt a strong need to help other families maneuver the healthcare system and advocate for fair care of children like theirs. Robert graduated with a Bachelor of Arts degree with a specialization in Accounting from the University of St. Thomas in St. Paul, Minnesota. While at St. Thomas, he also played soccer. Robert currently works as a Senior Project Accountant for a privately-held, real estate firm. Robert loves to spend his free time outside of the office with his family, attending sporting events, going on walks and playing golf.  Robert’s goals for the ESA are to positively impact the way society views those diagnosed with ES as a whole, as well as advocating that all children with ES can live full and happy lives.

Advocacy Manager. Crystal
Crystal Simpson, Advocacy Manager Crystal@edwardssyndrome.org

Crystal Simpson, Advocacy Manager for the Edwards’ Syndrome Association, has a background in caregiving. She is married to her husband, Mike, and has raised six children, including her son Gunnar who was diagnosed with Edwards’ Syndrome. Before her son was born, Crystal worked as a CNA, which sparked her interest in advocating and therapy. Living in the beautiful mountains of Kentucky, Crystal loves to spend her free time with her family. She enjoys their side-by-side adventures through the mountains and relaxing in their pool on the property. Inspired by Gunnar’s sensory-seeking needs, Crystal provides valuable sensory coaching for parents and creates custom sensory packages for children with sensory processing disorders. Crystal’s inspiration to help found the ESA came from recognizing a critical need in the Edwards’ Syndrome community for resources and information beyond the initial post-birth period. By advocating for children like Gunnar, Crystal aims to change the statistics for Edwards Syndrome. 

Social Media Manager Brandon
Brandon Huxhold, Social Media Manager Brandon@edwardssyndrome.org

Brandon Huxhold is an individual who wears many hats – not only is he a Client Executive at Insight, but he is also the Social Media Manager for the Edwards Syndrome Association. How did he land such a unique role, you ask? Well, Brandon’s daughter Fiona has mosaic Edwards’ Syndrome, and he has effectively utilized social media to bring attention to and educate others about this rare condition. A graduate of St. Mary’s University of Minnesota, Brandon currently resides in Illinois with his family. When he isn’t busy working or spending time with his loved ones, he also enjoys playing golf and creating content for his TikTok page. His involvement with the ESA has allowed him to offer resources and support to other families living with Edwards’ Syndrome, all while working to further enhance the lives of those affected by this condition. With Brandon on board, the ESA has a dedicated and passionate advocate working to make a difference.

Kids Behind the ESA

This is a child diagnosed with Edwards Syndrome/Trisomy 18
Emma, Mosaic Trisomy 18, 5 years old
Mia is a child diagnosed with Edwards Syndrome/Trisomy 18
Mia, Full Trisomy 18, 4 years old
Gunnar is a child diagnosed with Edwards Syndrome/Trisomy 18
Gunnar, Full Trisomy 18, 8 years old
Fiona is a child diagnosed with Edwards Syndrome/Trisomy 18
Fiona, Mosaic Trisomy 18, 2 years old