In January 2016, Haley was relieved to finally have a diagnosis for her son who suffered many delays and challenges. But with that relief in a diagnosis, there was also heartache from the limited amount of information and lack of resources and guidance available. Her passion to help not only her son but all those affected by SETBP1 disorder led her on a journey to help find therapies and treatments to improve their quality of life. With the support of her family, friends, and the growing community of families affected by SETBP1 differences, she founded SETBP1 Society. Haley graduated from the University of Texas with a bachelors in mathematics. She draws on her previous experience working in product management, project management, research, and sales, as well as her commitment to her son to help SETBP1 Society reach its fundraising and research goals. She feels fortunate to be working on behalf of all families affected by SETBP1 disorder at home while caring for her own family in Austin, TX.