Children with CYFIP2 DEE often experience motor impairments and muscle tone abnormalities which impacts fine motor skill development, daily functions and playtime. Adaptive technology is available to assist in developing these skills, however, adaptive toys can be very costly to families. This is due to the cost of equipment needed to modify the toy and make the switches. Sometimes, these types of toys are available through early intervention programs on a "borrow and return" basis, but they are often in high demand.

Thank you for your interest in volunteering with the CYFIP2 Network! Below are our current volunteer positions that we would like to fill! 

Please Note: CYFIP2 Network is not affiliated with the below sites. These links are provided solely for your convenience and do not signify endorsement or approval of these external sites. We have no control over the content or availability of these sites and accept no responsibility for them. Your use of any third-party websites is at your own risk and subject to the terms and conditions of those sites.

Please note: the exact number of people affected with CYFIP2 EIEE/DEE is increasing as more people access genetic testing. The number of "cases known" will change over time. These documents are current as of April 2025. 

How Biological Samples Fuel Research for Rare Conditions

The CYFIP2 Network is excited to announce that the foundation has been awarded a significant research resource: a mouse model to be generated with the CYFIP2 Arg87Cys variation. This generous contribution from an outstanding research organization will be part of their current round of organizational projects aimed at advancing CYFIP2 research.

Natural History Study - Institute of Medical Genetics, University of Zurich

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Genetics plays a fundamental role in shaping our development and health, and specific gene variants can lead to profound effects on bodily functions and behavior. One such variant is Arg87Cys in the CYFIP2 gene. 

Proclamation requests are a way to bring public attention to rare conditions and diseases, It is a free and easy way to request a day of recognition for those affected and helps to raise awareness. States usually have a process on how a Proclamation can be requested, which can be found on the state website. (Please note that states may change these websites and guidelines at any time.) A Proclamation Request usually includes "WHEREAS" text, which will be included in the proclamation. We have written a suggested "WHEREAS" text, included on this page, to help with your request. Please feel free to customize it however you would like. Adding personal experiences and stories can help communicate why a proclamation is important to you!