A parent’s perspective: Living with a young child with SETBP1 disorder by Lindsey Noonan
Learn about Cole and the beginnings of SETBP1 Society (video produced by Cordelaine Kline and Andy Olson)
Meet the SETBP1 Researchers and Clinicians
Meet Bregje van Bon, MD, PhD! In this interview, Dr van Bon shares what role she plays as a clinical geneticist, how her interest in SETBP1 began and her hopes for our SETBP1 community!
Audrey Brumback – Neuromodulation of prefrontal circuits in a mouse model of SETBP1 disorder
Hear Aamir Zuberi, a scientist at The Jackson Laboratory, talk about the 2 SETBP1 disorder mice his team developed and the important role mice play in rare disorder research.
Meet Prof Dr Simon Fisher! In this interview, Prof Dr Simon Fisher talks about his interest in SETBP1 and other language-related genes, how he became interested in SETBP1, what he is excited about – research-wise!
Meet Carl Ernst, PhD! In this interview, Dr Ernst shares his excitement for studying SETBP1, how he was introduced to SETBP1 disorder, and the collaborative spirt he has with the SETBP1 community!
Meet Dr Siddharth (Sid) Srivastava! In this interview, he talks about his draw to the SETBP1 community, his plans for the clinic and what he finds exciting about SETBP1 research!
Meet Lilit Antonyan! Here about her exciting research and her connection to our SETBP1 community!
Meet Dr Angela Morgan! Hear her present her findings from her SETBP1 speech and language study to our SETBP1 community in late 2020.
Meet Maggie Wong! Here about her mini-brain research and her excitement about the move to open science!
Educational Webinars
What is SETBP1-HD? – part of the SETBP1 Science Bites educational series presented by Jordan Whitlock, PhD – the newest member of our Medical and Scientific Advisory Board
Variants in SETBP1-HD – part of the SETBP1 Science Bites educational series presented by Jordan Whitlock, PhD – the newest member of our Medical and Scientific Advisory Board
Through a partnership with IDefine, SETBP1 Society, and the KdVS Foundation, we invite you to catch up on our first webinar in our series of educational webinars called “It Takes a Village”. Expert Kelly Rhyne spoke about PreK-4th grade IEPs!
Through a partnership with IDefine, SETBP1 Society, and the KdVS Foundation, we invite you to our second webinar in our series of educational webinars called “It Takes a Village”. Hear from a high school special education teacher and SETBP1 sibling, Molly Iverson, who works with indivdiuals ages 16-23 with special needs in the UK talk about 5th-12th grade IEPs!
SETBP1 Society is excited to be participating in the Expanded Observer-Reported Communication Ability (E-ORCA) study! With a grant from the U.S. Food and Drug Administration (FDA), Dr. Christy Zigler (Principal Investigator) and other investigators will work with COMBINEDBrain, a patient advocacy consortium, to expand the ORCA measure to a range of neurodevelopmental disorders including SETBP1 haploinsufficiency disorder and SETBP1-related disorder.