Corrine's Crew to Cure

Justin Schueler / CHD2 Awareness Day 2025

Support of the Coalition to Cure CHD2 (CCC) is crucial to connect CHD2 families, engage researchers in the scientific community, and align our combined efforts to FIND A CURE!

  • $7,278

    Raised

  • $7,500

    Goal

  • 42

    Supporters

  • 36

    Days Remaining

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About Corrine's Crew to Cure

In March of 2023 our daughter Corrine was diagnosed with a rare neurodevelopmental genetic disorder - CHD2 myoclonic encephalopathy. The Coalition to Cure CHD2 (CCC) is a parent-led advocacy group that was formed to raise awareness of the disorder and raise funds to support research to find a cure.

Corrine turned 3 this summer and is starting to spread her wings. Quite literally by flapping her arms and clapping her hands with her Chicken-Dance Elmo; which is now a daily routine 😊.  She also started school this past fall and is enrolled in a K3 Special Education class. Her teachers are amazing and Corrine really comes alive in the classroom. She is described as determined, social, and interested in learning. She is learning new skills, new words, and making friends. The IEP process was long and challenging, but we are now more confident that she is getting the support and therapies she needs. 

Corrine continues to experience seizures that present in different ways every few months. While her current combination of medications has helped to reduce seizure frequency, we are uncertain if this will hold. We are hopeful that advancements in medications and other treatments can lead to better control. 

Wading through the unknown of a rare disease is frustrating and lonely at times. The Coalition to Cure CHD2 has been incredibly uplifting for our family. It also provided opportunities for us to be involved through sharing our story, volunteering our time, and raising awareness. Together we can FIND A CURE!