ASXL Rare Research Endowment Foundation appoints Dr. Karen S. Ho as Chief Scientific Officer
New leadership appointment marks a major milestone in advancing ASXL-related disorder research
Karen S. Ho, PhD joins the ARRE Foundation as Chief Scientific Officer
The ASXL Rare Research Endowment (ARRE) Foundation, a nonprofit dedicated to accelerating research and improving care for individuals with ASXL-related disorders, is proud to announce the appointment of Karen S. Ho, PhD, MSc, as Chief Scientific Officer (CSO). This milestone reflects the ARRE Foundation’s continued growth and our commitment to driving meaningful scientific progress for rare disorders such as Bohring-Opitz Syndrome (ASXL1), Shashi-Pena Syndrome (ASXL2), and Bainbridge-Ropers Syndrome (ASXL3).
Karen brings deep expertise from both the academic and biotechnology sectors, with a career spanning basic research, translational medicine, and drug development. She joins the ARRE Foundation at a pivotal time in our evolution, as we continue to build research infrastructure and momentum for patient-centered clinical research and future treatment discovery.
“We are thrilled to welcome Karen to our leadership team,” said Amanda Johnson, Executive Director of the ARRE Foundation. “Her expertise across neurodevelopmental disorders, rare disease science, and research will be transformative for our mission.”
Karen currently serves as Vice President of Translational Medicine at Clene Nanomedicine, where she leads the development of a novel neuroprotective, remyelinating drug candidate from laboratory research to early clinical studies. Prior to this role, she served as lead scientist at a diagnostic testing startup, pioneering new approaches in interpreting genetic testing results for children with autism, developmental delays, and cognitive disabilities.
With a foundation in developmental biology and a lifelong passion for genetics, Karen earned a PhD in Developmental Biology from Stanford University, an MSc in Genetics from the University of Cambridge as a Marshall Scholar, and a BSc in Biochemistry from Washington University in St. Louis. She completed postdoctoral training in neuroscience at the University of Pennsylvania and currently holds an adjunct faculty position at the University of Utah School of Medicine.
Beyond her scientific accomplishments, Karen is known for her empathy and her deep connection with the rare disease community. “Some of the most unforgettable moments of my career have come from the hugs I have received and resilience I have witnessed in children living with rare disease,” said Karen. “I’m delighted and deeply honored to join the ARRE Foundation, and excited to help develop the research landscape for individuals and families affected by ASXL-related disorders.”
With Karen’s appointment, the ARRE Foundation further strengthens our commitment to advancing rare disease research. Her strategic vision and scientific leadership will guide the continued development and implementation of our Research Roadmap, expand clinician engagement, and accelerate progress toward future therapeutic discoveries.
For more information about the ARRE Foundation and our research initiatives, please visit our Research Roadmap.
