Dear Guests and INSYNC Council members,
Welcome to this 2nd annual meeting of the International Angelman Syndrome Research Council (INSYNC-AS).
We are grateful that you have agreed to participate in this effort to build a community of scientists, clinicians, pharmaceutical executives, regulators, and other thought leaders, to accelerate drug development for Angelman syndrome and other related neurodevelopmental disorders (NDDs).
Our hope is that these discussions will help to inform funding strategies that build on the recent successes in Angelman syndrome, will encourage research in areas where gaps need to be filled, and will help support how these learnings can be applied to other NDDs.
This year we are focusing Day 1 on the current state of drug development in Angelman syndrome and bringing in key experts on how to best improve diagnostic and patient identification efforts globally as more gene therapy and disease modifying therapies are reaching the clinics. We will then end the day with a focus on biomarkers being developed for Angelman syndrome through the Angelman syndrome Biomarker and Outcome Measure Consortium (ABOM).
On Day 2 we will be focusing on 2 other NDDs, Rett syndrome and STXBP1 Disorders. Our team of council members and invited speakers will work to support key opinion leaders for these disorders and support their drug development efforts meeting them where they are in their journey.
We are excited about the progress in this field, but also realize that these are still early days. By bringing diverse talent together we hope to encourage and accelerate the highest quality work to bring meaningful change to the lives of all individuals living with NDDs.
Thank you for being a part of this effort!
Allyson Berent, DVM, DACVIM
Chief Science Officer, Foundation for Angelman Syndrome Therapeutics
Co-Director, INSYNC
Co-Director, Angelman Syndrome Biomarker and Outcome Measure Consortium (ABOM)
Chief Operating Officer, GeneTx Biotherapeutics
Director of Interventional Endoscopy, Internal Medicine, The Animal Medical Center
Mother, Quincy 8 years old (deletion + AS)
allyson.berent@cureangelman.org
John E. Spiro, PhD
Deputy Scientific Director, Simons Foundation Autism Research Initiative (SFARI)
Co-Director, INSYNC
jspiro@simonsfoundation.org
Jennifer Panagoulias, RAC
Co-Director, INSYNC
Regulatory Advisor, Foundation for Angelman Syndrome Therapeutics
Co-Director, Angelman Syndrome Biomarker and Outcome Measure Consortium (ABOM)
jennifer.panagoulias@cureangelman.org
