CYFIP2 Network

Our mission

The CYFIP2 Network seeks to raise awareness, and support children, families and research of CYFIP2 Developmental and Epileptic Encephalopathy. CYFIP2-DEE is an ultra-rare genetic neurological disorder that causes developmental delays, seizures, and other complex challenges, with no approved treatments that specifically target the condition.

Impact story

Imagine being told that your child has an extremely rare genetic condition, that there are only a handful of other families in the world facing the same diagnosis, and that there are no approved treatments. For families affected by CYFIP2 Developmental and Epileptic Encephalopathy (CYFIP2-DEE), this is their reality. Children living with CYFIP2-DEE face life-altering challenges, including seizures, significant developmental delays, and complex medical needs. Their families navigate countless appointments, therapies, and uncertainties, often without knowing what the future holds. The CYFIP2 Network was founded by a mother who refused to accept that the absence of treatments meant the absence of hope. What began as one family’s search for answers has grown into a global community working to advance scientific research and bring potential treatments closer to reality. And today, that hope is becoming progress. Through research partnerships, scientists are studying CYFIP2, developing disease models, and exploring new approaches that could one day lead to meaningful treatments for children with CYFIP2-DEE. But rare disease research faces a significant obstacle: limited funding. Without financial support, promising discoveries can stall before they ever reach the children who need them. That’s where your gift makes a difference. Your donation helps fund the research needed to test potential treatments , better understand CYFIP2-DEE, and move potential treatments forward. Every contribution, regardless of size, helps create opportunities for scientific progress that might otherwise remain out of reach. For a family living with CYFIP2-DEE, your generosity represents more than a donation. It represents the possibility of better seizure control, improved development, greater independence, and a brighter future. We cannot promise when a treatment will become available. But together, we can help give researchers the resources they need to keep searching. Our children are rare. Their challenges are real. Their futures matter. And because of people like you, they have hope. Help us turn hope into research, and research into possibilities.

Organization details

EIN

93-4821164

Founded

2023

Headquarters

Cameron, NC

Website

https://www.cyfip2network.org

Listed on Jubily

11/3/2026