Penny's Flight in Action

Current Projects

Penny’s Flight recently sponsored a 3-day "think tank" conference at the storied Banbury Center at Cold Spring Harbor Laboratory (pictured above), focused exclusively on Cognition and Behavior in NF1. This was the first NF-focused gathering at CSHL in two decades, bringing together a powerful group of 30 scientists, clinicians, and advocates, all dedicated to making real progress against NF1.

The conference was a huge success, with a collaborative atmosphere that sparked innovative ideas, identified key knowledge gaps, and laid the foundation for targeted future research. We look forward to hearing about progress at next year's conference, which Penny’s Flight is excited to sponsor once again.

Together, we’re building the momentum needed to find a cure for NF1. Thank you to all who contributed to making this event a success and to those who continue to push the boundaries of NF research.

For more information on attendees as well as agenda from our Banbury meeting please visit www.cshl.edu

What happens when researchers, clinicians, and advocates unite around a rare disease like NF1? Progress. In collaboration with @pennysflight Foundation, Cold Spring Harbor Laboratory’s @cshlbanbury convened global experts for the first NF1 meeting in two decades. The result? A bold new framework for understanding cognition and behavior in children with NF1.

The CABIN task force’s proposal—now published in Genes & Development—aims to help detect and address symptoms like learning delays earlier, improving care for kids with NF1 and potentially transforming approaches to other neurodevelopmental disorders.

Read More:
https://www.cshl.edu/nf1-scientific-insight-and-systemic-change/

More about Penny's Flight

Penny’s Flight Foundation is driven by a vexing truth: NF1 is the most common genetic disorder globally and still has no cure.