Growing our Smaller Genetic Communities

As 2022 heads to a close, we look back on the amazing accomplishments made possible by all of YOU. More people have joined Simons Searchlight this year than ever before, with over 1,400 new families joining the effort to create scientific breakthroughs for rare genetic neurodevelopmental disorders. We are nearly six thousand strong!

New families find out about Simons Searchlight every day. This quarter, we highlight our genetic communities in the early stages of growth. These “small but mighty” groups have made great strides in sharing information about the importance of research participation, and it shows. We were able to release data from 28 additional genetic conditions in September because of your continued commitment. Every survey, genetic report, and blood sample leads us one step closer to the scientific progress we all want.

Growing your community means pursuing new, innovative ideas. This month, we spotlight Newborn Screening in a webinar with our principal investigator, Wendy Chung. Most of you say that getting an earlier genetic diagnosis would have been helpful in ending your diagnostic odyssey and getting your children the services they need as soon as possible. Wearing her Columbia University Medical Center research hat, Chung describes a separate program that she is spearheading to expand the genes tested at birth for all babies.

We have so much to look forward to together. We are driven by science, and united by hope!

All the best,

Jennifer Tjernagel
Senior Project Manager, SFARI, Simons Searchlight