CYFIP2 NETWORK INC

Cause Area

Board Development
Children & Youth
Community
Health & Medicine
People with Disabilities

Location

331 ASHEFORD WAYCAMERON, NC 28326 United States

Website:

https://www.cyfip2network.org/

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Website:
https://www.cyfip2network.org/

Active Opportunities (2)

Fundraising & Marketing Volunteer

Flexible Schedule | Virtual Opportunity

Effective fundraising and marketing are key skills that help to drive us one step closer to our goal: a cure for CYFIP2 EIEE. From the comfort of your home and with a flexible schedule allowing you to volunteer when your time best permits, you can help us do this! This volunteer opportunity would include a minimum of 5 hours per week with some of the following tasks: Sharing event flyers online and at local businesses; Online marketing for events and disease awareness initiatives; Creating event materials or social media content; and others! Your support as a volunteer for the CYFIP2 Network has tremendous value to our mission and can make a significant difference in the lives of children with CYFIP2 EIEE! If this sounds like a volunteer opportunity that you would enjoy, we urge you to fill out our registration form!

Date Posted: 2024-11-06
Virtual IEP Consultant

2024-11-07 - 2025-02-05 | Virtual Opportunity

This is a virtual volunteer opportunity providing consultation services to families navigating the IEP process for a child with a CYFIP2 condition. This role would review IEP documents and advocate for essential services. Advocating for a child with a rare condition can be difficult without a shared understanding of how the condition affects children and what services are needed. You role as an IEP consultant would enable families to advocate for these services to ensure academic success. Families would contact you directly through an addition on our website to schedule virtual consultation. We ask for a minimum of 3 hours per week availability, however, that does not guarentee that families will need 3 hours each week.

Date Posted: 2024-11-07

Organization Information

Mission Statement

Our mission is to raise awareness and support children, families and research of CYFIP2 Early Infantile Epileptic Encephalopathy.

Description

At 2 months old, our son was diagnosed with CYFIP2 Early Infantile Epileptic Encephalopathy (EIEE). CYFIP2 EIEE is an ultra-rare, pediatric, neurodevelopmental condition that causes severe and frequent drug resistant seizures, neutropenia, hypotonia, vision impairments and more. We are a volunteer, parent-run organization on a mission to raise awareness and fundraise in support of research for the development of treatments that target the CYFIP2 gene.

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CYFIP2 NETWORK INC

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