Board of Directors

Haley Oyler
Haley Oyler
President

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 loss-of-function mutations 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 a SETBP1 mutation at home while caring for her own family in Austin, TX.

Eric Oyler
Eric Oyler
Vice President

After meeting the love of his life in math class at the University of Texas and receiving his degree in Computer Science, Eric’s work and many adventures led him down the path to a career in non-profit services, particularly in web development and online fundraising. Eric, along with his wife, traveled across countries and oceans in search for what was most meaningful in this world, only to find that its beauty was embodied within a tiny being of spirit and passion. The greatest adventure life had in store was with his son, who would later be diagnosed with SETBP1 disorder. Cole, who he would find to be an enigma of closeness in heart and distance in touch, would understand emotion yet miss the rational, would teach him sincere curiosity and interest in the most mundane aspects of this world, would expand Eric’s life in the most unique and defining way. And in return, Eric, with his wife’s lead, would help to bring other similar families together to build a community to drive research and understanding of not only this newly recognized, but highly relevant gene and disorder , but also into the understanding of what makes us who we are.

Eric draws on his experience in the non-profit space, serving such organizations as the Alzheimer’s Association, American Cancer Society, National MS Society, and many more non-profit organizations while working at Convio and Blackbaud. In addition to his current employment with the Alzheimer’s Association, Eric also provides consultant services to the Childhood Apraxia of Speech of North America (CASANA). Eric utilizes his experience in full stack web development and online fundraising to support the SETBP1 Society in reaching its goals.

Dr. Trina Geye
Dr. Trina Geye
Treasurer

Trina has a PhD in educational psychology and is also a Licensed Professional Counselor. In her current position at Tarleton State University, she teaches for the Department of Psychological Sciences and also supervises services to students with disabilities, the campus testing center, and peer academic support programs. Trina’s research interests include the mental representation of numerical magnitude, particularly as it relates to individual differences in mathematics ability. Prior to working in higher education, she served as the Executive Director of CASA for the Cross Timbers Area, and also has experience working with at-risk youth and adults with developmental disabilities. Trina lives in Stephenville, Texas with her husband, Jake, and their sons, Gavin and Ian.

Alice McConnell
Alice McConnell
Secretary

Alice’s professional interests have always been driven by her deep desire to improve communities and solve problems. She has years of experience administering both private and government contracts, designing, planning, coordinating, scheduling, estimating, and managing large complex multi-year engineering projects. She holds a Professional Engineer’s License in Civil Engineering. In 2009 Alice’s daughter, Evie, was born. Not long after in 2011 her son Jack came along. Shortly after Jack was born, Evie was diagnosed with Succinic Semialdehyde Dehydrogenase deficiency (SSADHD). Jack was tested and he was also diagnosed with SSADHD. Their diagnosis led Alice to put her PE license on inactive status and submerge herself into the world of rare disorders.

She quickly understood after hitting a wall with traditional biopharma companies that due to the small diagnosed population size that a different model was needed to commercialize a treatment for ultra-orphan disorders. This awakened her to the complexity of developing a treatment for an ultra-orphan disorder which led to the formation of Speragen.

Alice co-founded a company dedicated to commercializing treatments for rare disorders. They focus on research, securing intellectual property, engaging the FDA, supporting clinical trial enrollment and progression, aiding diagnosis and involving their patient population.

Elisabeth Fiquet, MS
Elisabeth Fiquet, MS
Board Member

Elisabeth Fiquet obtained her Master’s degree in Biology in 1988. In collaboration with dermatologists, Elisabeth actively took part in the implementation of various clinical study protocols for skin aging, acne and other skin diseases. After 30 years in France, eager for change and new challenges, she arrived in Montreal, Canada. Four years later, she decided to found a clinical testing services company dedicated to the beauty and personal care industry. She enjoys working with a dedicated and enthusiastic team.

Despite her busy schedule, she manages to share her time between her work and her family. Antoine, her little angel, came into her life in 2007. In her mother’s heart, she knew that something was different with her very small baby. His development was delayed and he started walking at 25 months. He has sizable delays in speech, as well as, motor and intellectual skills. A very hard moment was the announcement by a neurologist at Ste Justine Hospital that Antoine has a genetic disorder. They had a chance to participate in a clinical study and the final diagnosis was obtained when he was 7 years old: SETBP1 mutation on chromosome 18. At that moment, her partner, Jean-François, decided to create the ‘SETBP1 support site’ Facebook Page with the hope to communicate with other parents and obtain answers about the future of their child. Elisabeth is very happy to support the SETBP1 Society and has a lot of hope for the advancement of this gene research and in the fact that the Society strives to increase and spread scientific information through meetings and publications.