Who We Are
Marissa Mitchel, President
Marissa is the mother of a child with NRXN1 disorder as well as a speech-language pathologist and researcher at a neurodevelopmental pediatric clinic. After her son was diagnosed with 2p16.3 deletion in 2021, she tried to find accurate information and connect with other families affected by NRXN1 disorder only to realize that there was no foundation to bring together families and researchers. Through her job, she has seen firsthand how helpful such patient advocacy groups can be in supporting individuals with rare disorders. She strives to capitalize on her roles as advocate, researcher, and clinician to forge a collaborative network that supports individuals with NRXN1 disorder.
Annie Thomas, Vice President
Annie is the mother of a child with NRXN1 deletion. She lives in Australia with her family and works in the health and wellness industry. She is passionate about helping all children lead happy, fulfilling lives and celebrate their uniqueness. Annie is hopeful that further research through the NRXN1 Network will provide families with extra support, knowledge and comfort to help their child reach their potential and know they are not alone. Annie holds a strong belief that through developing a community of families who are sharing the same experience, our children will thrive.
Aaron Mitchel, Treasurer
Aaron is the father of a child with a NRXN1 deletion. He is also an associate professor of psychology at Bucknell University where he studies language acquisition, face perception, and multisensory integration. He is hopeful that the NRXN1 Network can be a source of support for individuals with NRXN1 disorder as well as their families, both by supporting research and clinical advances but also by providing a sense of community through shared experiences.
Kathleen Thomas, Secretary
Kathleen is the mother of a child with NRXN1 deletion. She also is a professor at a university in the field of Kinesiology. When her son was diagnosed with NRXN1, the researcher in her took over and she looked for more information: What does this gene mean for her son and what does his future look like? As she explored websites, organizations and the research literature, she realized that while there is some information out there, there is no centralized group or easy way to connect with others families. Through many challenges in life, Kathleen learned that knowing more seems to give you a sense of control over the situation. This is one of the reasons she is drawn to NRXN1 Network. To help us learn more about NRXN1 and its impact. The more we know, the more we can have a sense of control. Creating a connection across families and researchers is way to build a sense of community to help learn from each other and create a sense of control.
Don Culp, Board Member
Don is a dedicated advocate for families affected by NRXN1 deletion, a journey that became personal after his daughter, Braelyn, tragically passed away on October 2, 2012. As someone with the microdeletion himself, he is driven to further research, treatment, and understanding of this condition.
Having recently retired from the military, he now serves as an Adjunct Professor at Embry-Riddle Aeronautical University's School of Aviation and work as a Flight Consultant. Additionally, he founded a 501(c)(3) nonprofit organization dedicated to fundraising and advocating for children with impairing conditions, aiming to improve their quality of life.
His mission is to create a significant impact for those affected by NRXN1 deletion and to provide support for their families and caregivers. He strives to ensure that families have the information and resources they need, helping to alleviate the overwhelming feelings that often accompany a diagnosis. He believes that together we can build a brighter future for children like his daughter.