Help support CHD2 research and community!

Corrine’s Crew is raising awareness of CHD2 and fundraising to accelerate research to find new treatments. CHD2 neurodevelopmental disorders are genetic and ultra rare. They cause drug-resistant epilepsy, language and developmental delays, autism spectrum disorders, intellectual disability, neuropsychiatric conditions, low muscle tone, and challenging behaviors. We are still learning about ways CHD2 affects individuals. Although we don’t know how many people are living with CHD2-related disorders, we suspect there are only a few thousand in the world. And our daughter Corrine is one of them.

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.  After Corrine’s diagnosis in March 2023, we joined the CCC and attended their first two Family & Scientific conferences in 2023 and 2025.  These events were an amazing opportunity to connect with other CHD2 families, talk to clinicians seeing CHD2 patients, and connect with researchers trying to find a cure. 

Corrine is loving life as a 4-year old.  She started 4K at a new school this year that has an incredible Special Education program.  She is lucky enough to have a one-on-one aid with her to provide the extra help she needs throughout the day.  Her mobility has improved significantly over the past year.  She loves climbing on anything, including the dinning room table, and keeps us on our toes.

We are continuing to monitor Corrine’s seizure activity and medications.  We continue to see relatively low seizure activity currently and are considering additional reduction in her medications.  The balance of seizure control versus side effects can be tricky. 

More About CHD2: CHD2 is a gene located on chromosome 15 that provides instructions for making a protein called chromodomain-DNA-helicase-binding protein 2. This protein regulates gene activity through a process called chromatin remodeling and may play an important role in the brain, although its exact function is not well understood. 

More About Coalition to Cure CHD2: The CCC 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!

The mission of Coalition to Cure CHD2 (CCC) is to improve the lives of those affected by CHD2-related disorders by increasing education, building community, and accelerating research to uncover a cure. CCC carries out its mission by providing competitive research grants; encouraging collaboration between researchers; convening professional advisors; and providing information to families and clinicians through seminars, symposia, publications and its website.

CHD2 Awareness Day fundraising will support CCC's three strategic pillars:

·       Education: Increase patient and professional education of CHD2-related disorders.

·       Community: Build an engaged and empowered CHD2 community.

·       Research: Accelerate research in CHD2-related disorders.

For more information visit: www.curechd2.org

Checks can be made payable to "Coalition to Cure CHD2” and mailed to Shawn and Jess or the address below: Coalition to Cure CHD2, Attn: Development, 302 E. Ogden Ave, Naperville, IL 60563