ARRE Foundation expands scientific leadership with new MSAB members
Rob Illingworth, PhD (left) from the University of Edinburgh and Valerie Arboleda, MD, PhD (right) from the University of California Los Angeles join the ARRE Foundation’s Medical and Scientific Advisory Board
The ASXL Rare Research Endowment (ARRE) Foundation is proud to announce the appointment of two outstanding scientists to our Medical and Scientific Advisory Board (MSAB): Dr. Valerie Arboleda and Dr. Rob Illingworth. Their expertise in human genetics, developmental biology, and epigenetics brings strength to our translational science efforts—helping us build a stronger foundation of knowledge upon which future treatments, standards of care, and clinical trials can be developed.
This expansion of our advisory board reflects the fact that we are attracting leading experts because of the strength of our research vision and the urgency of our mission.
“The families, researchers, and advocates who are part of the ARRE Foundation have created something truly unique,” said Dr. Valerie Arboleda. “It’s an honor to contribute to a scientific effort that’s grounded in community and focused on the future of translational research for rare neurodevelopmental conditions.”
Dr. Arboleda is a physician-scientist at the University of California, Los Angeles. Her lab integrates large-scale clinical and molecular data to better understand and treat human disease. She is also co-principal investigator of the biobank for ASXL samples, a key component of the ASXL-Related Disorders Natural History Study. Her experience in clinical genomics and human pathology is instrumental to advancing our understanding of ASXL-related disorders, including Bohring-Opitz Syndrome (ASXL1), Shashi-Pena Syndrome (ASXL2), and Bainbridge-Ropers Syndrome (ASXL3).
Dr. Rob Illingworth brings complementary expertise in gene regulation and developmental biology. Based at the Centre for Regenerative Medicine in Edinburgh, Dr. Illingworth leads a lab investigating how chromatin structure and epigenetic modifications influence early development and contribute to rare disease. His research focuses on unravelling the mechanisms that control when and where genes are turned on—critical processes that go awry in many developmental and intellectual disabilities.
“I’m inspired by the opportunity to apply our lab’s work to a field where it can make a direct and lasting impact,” said Dr. Rob Illingworth. “This is an exciting moment to help accelerate scientific discovery for ASXL-related disorders.”
The appointments of Dr. Arboleda and Dr. Illingworth to the ARRE Foundation’s Medical and Scientific Advisory Board significantly strengthen our leadership in basic and translational science. Much remains to be uncovered about the underlying biology of ASXL-related disorders to inform a path to treatments, and their combined expertise adds critical perspective to the development and implementation of our research strategy. Their perspectives will help guide and shape our scientific agenda, bridging foundational discovery with future therapeutic possibilities.
We are grateful to have their leadership and expertise guiding our next chapter. To learn more, you can view their full biographies on our website: https://www.arrefoundation.org/leadership
