Board Members

I am a semi-retired architect, full-time community diverse volunteer at Children’s Mercy Hospital and Research Institute for the past 15 years. I am the proud father of three girls with my best friend and wife, Diane, who is also highly active in the Children’s Mercy family and Parent voice as a member of the Board of Directors.

My love for Children’s Mercy grew from the care, support and love of my middle daughter, Elizabeth. Diagnosed with Angelman Syndrome, an unknown genetic disorder and calcification of the basal ganglia with multiple medical complexities deriving from these. 

Elizabeth passed away at the age of 19 from Angelman’s Syndrome and another undiagnosed genetic disorder. Her experience allowed me to share her voice and continue to be an advocate for all children, families, and caregivers. 

I am a middle school English teacher and married to my amazing husband, Kris. We have two daughters. Nicole is married to Nathan and Kacie lives at home with us and has Angelman Syndrome. Due to Kacie's diagnosis at the age of 11 months, we have spent a lot of time at Children's Mercy over the last two decades as we visited many of the specialty clinics to help her with the multiple issues associated with Angelman Syndrome.

With the creation of the Angelman Syndrome Clinic at Children's Mercy, I was given the opportunity to join the PFAC and help offer my expertise as a parent and caregiver of a child with this complex disorder. I am so happy that this clinic was brought to Kansas City and am willing to help out in any way that I can. 

My husband, Alex, and I have two wonderful boys. Reis was born with bi-lateral cleft lip and palate in 2009. He has been seen at Children’s Mercy since he was born. He is seen in several clinics at CMH. Our youngest, Lynkin, was born in 2010. In December of 2011, he was diagnosed with Angelman Syndrome. He has been seen at Children’s Mercy since he was 14 months old. He is seen in several clinics to help with all the medical needs that come along with AS. Children’s Mercy has and will always be a big part of our lives. I am so thankful to be able to join PFAC and help support the hospital and other families! 

My husband, Patrick, and I are lucky parents to Colin (6yo), and twin girls, Kellie and Maddie (4yo). My journey with Children's Mercy began professionally in 2016 as a nurse practitioner in the Special Care Clinic. In 2020, our family's journey at Children's Mercy began in the Genetics Clinic when Maddie was diagnosed with Angelman syndrome. We traveled to Mass General's Angelman Syndrome Clinic in Boston following her diagnosis to meet with the expert in this field. We recognized the importance of having this expertise in Kansas City for Maddie and all other children affected by Angelman syndrome. We were fortunate to partner with Dr. Le Pichon in the establishment of the Angelman Syndrome Clinic at CM in late 2022.  

As a pediatric health care provider and parent to a child with complex medical needs, I am incredibly proud and honored to be co-chairing the Angelman Syndrome PFAC. I am hopeful for the future of Angelman syndrome through the centralized medical care in the Angelman Syndrome Clinic as well as the ongoing research at Children's Mercy Research Institute. Our family established Maddie's Mission Foundation in 2022 to support the holistic needs of children living with rare diseases, including Angelman syndrome. Maddie's Mission Foundation is honored to support Children's Mercy's continued science, research, and medical progress in the future as we have so much to be hopeful for! 

My journey with Children's Mercy began in 2020 at the Genetics Clinic when my wife, Laura, and I's daughter, Maddie, was diagnosed with Angelman syndrome. I realize Maddie's biggest advocates, her brother, Colin, and sister, Kellie and the community surrounding us including CMH are why she thrives today. I joined the PFAC as a way to give back to the organization that has been a significant part of my family’s journey. I continue to be grateful for the opportunity to advocate for Angelman children and all special needs families and patients.

My husband Bobby and I share two sons, Caden and Sawyer, and one persnickety geriatric dog, Gizmo. Caden missed several early developmental milestones and was ultimately diagnosed with mosaic Angelman Syndrome shortly after his second birthday. Our family was plunged into a new reality of specialists and therapies, but Children’s Mercy has been with us every step of the way. We are “frequent fliers” of several different clinics at CMH, and I’m thrilled that we now have an Angelman Syndrome Clinic here in Kansas City! I am excited to be a part of the Angelman PFAC and look forward to advocating for other Angelman families who make our fantastic clinic their medical home. In addition to the PFAC, I co-coordinate the local ASF Walk in Olathe, KS and I work part time for the Angelman Syndrome Foundation as a part of the Ladder Learning Network.