Laura is the Founder and Chair of the ASXL Rare Research Endowment Foundation and mother of Alex, who has Bohring-Opitz Syndrome (ASXL1). She is passionate about supporting evidence-based research and improving management of care for ASXL families. Laura grew up in the New York metropolitan area and eventually relocated to southern Maine where she lives with her husband, Michael, and their children, Alexander, Abigail, and Natalia. She is the first person in her family to attend college and has a B.S. in Operations Research & Industrial Engineering from Cornell University, and a Masters in Systems Engineering and Graduate Certificate in Engineering Management from Stevens Institute of Technology. She has completed a Certificate in Leadership Excellence from Harvard and is certified in Scaled Agile Framework as well as Six Sigma. Laura worked for the Department of Defense as an Integrated Logistics Support Manager and Research & Development Systems Engineering Advisor for several years. After completing her masters degree, she changed careers to work for American Express where she has served in various consultative and capability development roles for over a decade. Laura enjoys traveling and building relationships with individuals from around the world and learning about different cultures.
Daniel’s son Asher received his diagnosis of Bohring-Opitz Syndrome in January of 2018 and joined the ARRE Board of Directors in 2021. In addition to his work with the ARRE Foundation, Daniel advocates for people with intellectual disabilities and complex medical needs to participate in and be welcomed into arts, culture, and recreational activities.
Daniel is currently the Executive-in-charge of Creative Operations at Visual Noise Creative, a creative studio for live events. Previously, Daniel has served as Managing Principal of Theatre Projects, the general manager and CFO of the groundbreaking dance troupe, Pilobolus, and as COO/CFO for Guild, a nationwide experiential marketing agency. As the owner of a theatrical lighting and technical management company, he designed lighting and managed multidisciplinary teams for more than 250 productions, winning several awards. Daniel is admitted to the bar in New York State and is a member of United Scenic Artists Local 829 of IATSE.
Lauren lives in Birmingham, Alabama with her family of five, including her daughter Adair, who was diagnosed with Bainbridge-Ropers Syndrome (ASXL3) in 2020.
Originally from Atlanta, Georgia, Lauren graduated Magna Cum Laude from Florida State University. Her degree in psychology, coupled with a minor in family sciences, led her to pursue a career in psychiatric research management at the Medical University of South Carolina.
Adair’s diagnostic journey reignited Lauren’s passion for medical research. Since then, she has actively participated in multiple ARRE Foundation subcommittees, including serving as the ASXL3 Parent Representative to the UCLA Registry and coordinating the Research Room at the ASXL Family Conference. Lauren is dedicated to informing, advocating, and advancing ASXL research, aspiring to create a brighter future for affected families.
When Lauren is not spending time with her family, she enjoys playing tennis and indulging in true crime podcasts.
Julie Chandler Lopez is the mother of a child with Bohring-Opitz Syndrome. She is passionate about research of all kinds and improving the quality of life for all children with ASXL disorders. She grew up in Portland, Oregon and now lives in small town Pocatello, Idaho with her husband and five children. She was co-founder and President of FSA, a local non-profit making a difference in children’s education for the past nine years.
Sankar is originally from India and lives in Luxembourg with his wife Ranjini and son Arya and daughter Diya. Their daughter Diya was diagnosed with Bainbridge-Ropers Syndrome (ASXL3) at the age of one. With immense support from several amazing people, Diya started walking when she was 6 years old and even started climbing stairs at age 7. True to her name, Diya truly brings light to the family and everyone around. Diya means light in Indian language – also where the festival of light Diwali comes from. She is non-verbal, for now – but definitely has a lot to say.
Sankar held various leadership roles at Hewlett Packard and now at Amazon in Luxembourg. He is deeply passionate about what ARRE Foundation stands for and the life changing work and started as a volunteer in 2022. Later he joined the board and now supports the board with his skills and experience. He feels grateful and humbled to have a role in shaping the strategy of the organization that would impact lives of our ASXL children and families. Sankar also loves helping people reach their financial independence and is a certified European Financial Advisor.
Michael is the father of a child with Bainbridge-Ropers Syndrome. Michael hopes to assist the ASXL community by enhancing an exchange of information and resources among families impacted by ASXL syndromes. He is an attorney with Cooper Levenson law firm based in Atlantic City, New Jersey, with offices throughout the country. Michael was born and raised in New Jersey and splits his time between New Jersey and Florida. He primarily practices in the areas of estate planning and corporate transactions. Michael earned a B.A. in Criminal Justice from George Washington University, a J.D. from Nova Southeastern University and an LL.M. from Western New England University.
Amanda Scheirer is proud to be the first Shashi-Pena Syndrome parent to serve on the board, representing her sweet son Connor Finn who was diagnosed in 2020.
Amanda has cultivated a long career in the arts as a writer, director, performer (and coffee enthusiast). Amanda moved to Orlando after completing her Masters of Philosophy in Theatre-Playwriting from Trinity College in Dublin, Ireland.
She is the founder of Without Fear Theatre, a company whose mission is to exclusively produce new works that feature live music and are created by local artists in a highly collaborative, creative process.
Amanda has also worked for Universal Orlando Entertainment, Ford’s Theatre in Washington D.C. and the historic Civic Theatre of Allentown, Pennsylvania. Studying and working in the entertainment industry internationally has gifted Amanda with quite the collection of adventurous, provocative, and funny stories which she has used to create several internationally produced plays and musicals as well as her first novel “How to Say I Love You.”
Amanda enjoys the many hats she’s worn over the years, but is especially proud of the one that reads “mom.”
Amanda joined the ARRE Foundation in 2021 as the organization’s first staff member. She leads the activities that support the ARRE Foundation’s mission of advancing research and improving quality of life for families living with ASXL-related disorders, including fundraising, programs, events, and partnerships. She is proud to have contributed to many advancements for the ASXL-related disorders community in her time with the ARRE Foundation, but her proudest achievement to date is supporting the development of a first GeneReviews article for Shashi-Pena Syndrome that published in November 2024 as it represents a true partnership between the family community, the medical community, and the ARRE Foundation.
Amanda brings over 15 years of experience in donor-centered fundraising, event management and nonprofit administration experience to the ARRE Foundation. In previous roles, she served at the Pulmonary Hypertension Association, DC Central Kitchen, and the ARVO Foundation for Eye Research. She holds a BS in Organizational Communication from Ithaca College and an MA in Nonprofit Management from the Notre Dame of Maryland University. Amanda is originally from Western New York (Go Bills!) and lives in Maine with her family.
Karen joined the ARRE Foundation in 2025 as Chief Scientific Officer. Karen has spent the majority of her professional career in biotech, first as lead scientist at a startup diagnostic testing company, where she streamlined and innovated new methodologies for the scientific interpretation of genetic testing results for children with autism, developmental delays, and/or cognitive impairment, and presently as VP, Translational Medicine at Clene Nanomedicine, where she leads the development of a novel neuroprotective, remyelinating drug candidate for the treatment of neurodegenerative disease from basic science to early clinical studies. Karen trained as a basic scientist whose favorite model organism is the fruit fly. After receiving her Bachelor of Science degree in Biochemistry summa cum laude from Washington University as a Compton Scholar, she lived in England for two years where she earned a Masters degree in Genetics from the University of Cambridge as a Marshall Scholar. She has a PhD in Developmental Biology from Stanford and completed her postdoctoral training as a National Sleep Foundation Pickwick Scholar and Howard Hughes Medical Institute Postdoctoral Fellow at University of Pennsylvania in the Department of Neuroscience. Karen serves on several rare disease group Scientific Advisory Boards, including as a scientific consultant for FamilieSCN2A Foundation, and holds a concurrent position as adjunct faculty at the University of Utah School of Medicine in the Department of Pediatrics, Division of Medical Genetics. She has gotten some of the best and most memorable hugs from children with rare disease.
She lives in Salt Lake City, Utah with her husband, Suresh Venkatasubramanian, two inspiring sons, a very silly cat, and nearly 100 orchids
Sarah served as a long-time volunteer with the ARRE Foundation prior to joining the staff team in 2024. Her son Sammy was one of the first children diagnosed with Shashi-Pena Syndrome (ASXL2-related disorder) in the first paper describing the disorder in 2016. Sarah has been actively involved in supporting other families ever since. She brings a wealth of experience to the role with her background in social work and her deep personal connection to the ASXL community. Sarah has previously served on the Newly Diagnosed Outreach Committee and as a speaker at past ARRE Foundation family conferences and educational events.
Sarah lives in Chicago with her husband Shawn and their three children.
Marissa joined the ARRE Foundation in 2023 as a contracted Project Manager. She supports the execution of ARRE Foundation initiatives by managing strategic planning processes in Monday.com and overseeing speaker logistics for the annual ASXL Research Symposium and biennial ASXL Family Conference.
Marissa brings over nine years of project management experience. In previous roles, she served as a Continuous Improvement Leader and Logistics Officer in the U.S. Army, where she led cross-functional teams and managed complex operational improvement projects. She holds a Master of Business Administration with a specialization in Operations Management and a Bachelor of Science in Engineering Management from The United States Military Academy. She is also a certified Project Management Professional (PMP) and a Lean Six Sigma Green Belt.
Marissa lives in the Philadelphia suburbs with her husband and three children.
Bonnie joined the ARRE Foundation in 2023 as contracted administrative assistant. She works behind the scenes supporting many of ARRE Foundation’s initiatives, including social media, the ASXL Care Directory, family education events, and various other tasks.
Bonnie brings over six years of nonprofit experience working in advocacy roles for persons with disabilities and medically fragile children and their families. In previous roles, she worked as the first Navigator Coordinator for the State of Massachusetts Disabled Persons Protection Commission Sexual Assault Response unit educating law enforcement, therapists, and various other community partners on providing support to clients in the community with disabilities. She also worked at Boston Medical Center on the 4C’s program helping provide wrap around support services to medically complex children in New England. She holds a Bachelor of Arts in Human Services from Salve Regina University. Bonnie lives in Massachusetts with her family.
