Chicago Monogenic Epilepsy Summit (CHIMES)
In July, Drs. Doug Nordli Jr. and Sam Volchenboum, in partnership with Data for the Common Good (D4CG) at the University of Chicago and the Chan Zuckerberg Initiative, invited the PURA Syndrome Foundation to the inaugural Chicago Monogenic Epilepsy Summit (CHIMES). CHIMES is an epilepsy data-sharing workshop bringing together leading minds in the field and it is formally launching a data commons to support collaboration and innovation. Our Research Liaison, Jim Lagowski, joined together with 70+ of the nation’s experts in rare epilepsies, including clinicians, researchers, industry partners, parents, and other advocates. CHIMES presents an opportunity for the PURA Syndrome Foundation to move forward together with these other stakeholders to create a unique resource for the international epilepsy community to power research, patient care, and improved therapy discovery for those affected by monogenic epilepsies. Special thanks to Dr. Nordli and Dr. Volchenboum for this invitation and their efforts to help navigate the complex landscape of epilepsy data and find ways to merge efforts to accelerate understanding and advance care of epilepsy. Additional information about CHIMES can be found here.
