Board of Directors
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.
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.
Eric’s work and travel led him down a path to serve the community and a career in the non-profit space, particularly in web development and online fundraising. Along with his wife, he 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. Recognizing that there was no organization focused on this ultra rare disorder, and that there was no significant research in this area, Eric and his wife decided they should take the lead and start SETBP1 Society to bring families together, collect and build resources for the newly diagnosed, and to push research for SETBP1 disorder forward.
Eric attended the University of Texas and Oklahoma State University, earning his degree in Computer Science. He draws on his experience in the non-profit space, serving such organizations as the Alzheimer’s Association, American Cancer Society, and National MS Society while managing a Professional Services team at Blackbaud (formerly Convio), and now working on digital fundraising for the Alzheimer’s Association. Eric utilizes his experience in full stack web development and online fundraising to support the SETBP1 Society in reaching its goals.
Eric’s work and travel led him down a path to serve the community and a career in the non-profit space, particularly in web development and online fundraising. Along with his wife, he 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. Recognizing that there was no organization focused on this ultra rare disorder, and that there was no significant research in this area, Eric and his wife decided they should take the lead and start SETBP1 Society to bring families together, collect and build resources for the newly diagnosed, and to push research for SETBP1 disorder forward.
Eric attended the University of Texas and Oklahoma State University, earning his degree in Computer Science. He draws on his experience in the non-profit space, serving such organizations as the Alzheimer’s Association, American Cancer Society, and National MS Society while managing a Professional Services team at Blackbaud (formerly Convio), and now working on digital fundraising for the Alzheimer’s Association. Eric utilizes his experience in full stack web development and online fundraising to support the SETBP1 Society in reaching its goals.
In 2019, Lindsey joined the SETBP1 community after her son, Corey was diagnosed with the disorder at just 7 months old. With him being one of the youngest diagnosed, she knew she needed to lock arms with the other families to navigate this new journey she found herself on. Immediately, she got to work connecting with other families, hearing their stories and finding new ways to spread the word about our small community.
Her goal in joining the SETBP1 Board is to help spread awareness for SETBP1 and provide support to the family’s of these amazing kiddos. It was a very challenging time when they received their SETBP1 diagnosis. “We could not have weathered this storm as well as we did without the support of our SETBP1 community”, says Lindsey. Her hope is to be the light for other families that are experiencing this pain and that with perseverance, brighter days on are on the horizon. Our kids are remarkable and they will accomplish so much with our help.
Lindsey and her husband, Michael, live in Omaha, NE with their daughter, Olivia, and son, Corey. She studied at the University of South Dakota where she obtained a Bachelor’s degree in Marketing with an emphasis in Contemporary Media & Journalism. She is now working in Sales with LinkedIn.
In 2019, Lindsey joined the SETBP1 community after her son, Corey was diagnosed with the disorder at just 7 months old. With him being one of the youngest diagnosed, she knew she needed to lock arms with the other families to navigate this new journey she found herself on. Immediately, she got to work connecting with other families, hearing their stories and finding new ways to spread the word about our small community.
Her goal in joining the SETBP1 Board is to help spread awareness for SETBP1 and provide support to the family’s of these amazing kiddos. It was a very challenging time when they received their SETBP1 diagnosis. “We could not have weathered this storm as well as we did without the support of our SETBP1 community”, says Lindsey. Her hope is to be the light for other families that are experiencing this pain and that with perseverance, brighter days on are on the horizon. Our kids are remarkable and they will accomplish so much with our help.
Lindsey and her husband, Michael, live in Omaha, NE with their daughter, Olivia, and son, Corey. She studied at the University of South Dakota where she obtained a Bachelor’s degree in Marketing with an emphasis in Contemporary Media & Journalism. She is now working in Sales with LinkedIn.
Erin Otness attended Northwestern University in Evanston, Illinois where she majored in Biochemistry and Molecular and Cell Biology. She received her Doctorate of Medicine, with Honors, from Baylor College of Medicine in Houston and subsequently did her residency training in pediatrics at Baylor Affiliated Hospitals including Texas Children’s Hospital and Ben Taub General Hospital. She has been a practicing pediatrician at Texas Children’s Pediatric Associates since 2006 where she enjoys taking care of many children with ADHD and a variety of developmental and learning differences.
She resides in Houston with her husband, Eric, and their three children, including their son, John, who has a SETBP1 difference. Despite John’s challenges, he is a loving and joyful boy who enjoys tennis, soccer, horseback riding and cheering for the Houston Astros.
Erin and her husband have spent time serving on the boards of several other organizations, including a school for children with special needs, a camp for children with cancer and a community theater and performing arts school. They are passionate about fundraising and advancing opportunities for children.
Erin and her family are very grateful for the SETBP1 community and are hoping to continue to raise awareness and eventually discover treatments that will improve the lives of people with SETBP1 differences.
Erin Otness attended Northwestern University in Evanston, Illinois where she majored in Biochemistry and Molecular and Cell Biology. She received her Doctorate of Medicine, with Honors, from Baylor College of Medicine in Houston and subsequently did her residency training in pediatrics at Baylor Affiliated Hospitals including Texas Children’s Hospital and Ben Taub General Hospital. She has been a practicing pediatrician at Texas Children’s Pediatric Associates since 2006 where she enjoys taking care of many children with ADHD and a variety of developmental and learning differences.
She resides in Houston with her husband, Eric, and their three children, including their son, John, who has a SETBP1 difference. Despite John’s challenges, he is a loving and joyful boy who enjoys tennis, soccer, horseback riding and cheering for the Houston Astros.
Erin and her husband have spent time serving on the boards of several other organizations, including a school for children with special needs, a camp for children with cancer and a community theater and performing arts school. They are passionate about fundraising and advancing opportunities for children.
Erin and her family are very grateful for the SETBP1 community and are hoping to continue to raise awareness and eventually discover treatments that will improve the lives of people with SETBP1 differences.
When Nicole learned of Colton’s diagnosis in February 2016, there was both relief and despair. Knowing that Whole Exome Sequencing may not yield any results, it was a surprise when she discovered her sweet son’s condition… SETBP1 disorder. Since those days, Nicole began researching everything she could about this disorder and was so excited to discover SETBP1 Society. Since joining SETBP1 Society, Nicole has been an active member of the community and a major supporter for treatment research for SETBP1 disorder.
Nicole was honored to be asked to be the SETBP1 Treasurer in the Fall of 2020. Nicole and her husband own multiple businesses, both for-profit and non-profit ventures. Nicole feels that she can really aid the SETBP1 Society with her business acumen. Nicole has a bachelor’s in business administration, and a Master of Education in Athletic Administration. Nicole has been a successful collegiate volleyball coach for over 20 years, having coached at Lehigh University, Temple University, Franklin & Marshall College, Keystone College, and the State University of New York at Cortland. Her teams have competed for a championship in every position she has held, and she has coached three All-Americans and several All Region volleyball student-athletes.
When Nicole is not coaching or working, she enjoys reading fiction novels, and playing with her kids. Nicole is married to Jeremy Wentz, VMD and they share 4 children: Jackson (15), Brielle (12), Colton (9) and his twin sister Caleena. Nicole resides in Clarks Summit, PA with her family and their dog, Chewy, and bunny, Smores!
When Nicole learned of Colton’s diagnosis in February 2016, there was both relief and despair. Knowing that Whole Exome Sequencing may not yield any results, it was a surprise when she discovered her sweet son’s condition… SETBP1 disorder. Since those days, Nicole began researching everything she could about this disorder and was so excited to discover SETBP1 Society. Since joining SETBP1 Society, Nicole has been an active member of the community and a major supporter for treatment research for SETBP1 disorder.
Nicole was honored to be asked to be the SETBP1 Treasurer in the Fall of 2020. Nicole and her husband own multiple businesses, both for-profit and non-profit ventures. Nicole feels that she can really aid the SETBP1 Society with her business acumen. Nicole has a bachelor’s in business administration, and a Master of Education in Athletic Administration. Nicole has been a successful collegiate volleyball coach for over 20 years, having coached at Lehigh University, Temple University, Franklin & Marshall College, Keystone College, and the State University of New York at Cortland. Her teams have competed for a championship in every position she has held, and she has coached three All-Americans and several All Region volleyball student-athletes.
When Nicole is not coaching or working, she enjoys reading fiction novels, and playing with her kids. Nicole is married to Jeremy Wentz, VMD and they share 4 children: Jackson (15), Brielle (12), Colton (9) and his twin sister Caleena. Nicole resides in Clarks Summit, PA with her family and their dog, Chewy, and bunny, Smores!
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.
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.
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.
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.