March 20: Raising Awareness for CHAMP1 Gene Disorder

On March 20, families around the world recognize CHAMP1 Awareness Day, a day dedicated to increasing understanding of a rare genetic condition known as CHAMP1-related disorder.

For families affected by CHAMP1, awareness plays a critical role. Because the condition is considered ultra-rare, many families face limited research, resources, and medical guidance. Awareness helps drive funding for research, supports families navigating the diagnosis, and brings greater understanding to a condition that many people have never heard of.

CHAMP1 gene disorder is a genetic condition that can impact neurological development. Individuals with CHAMP1 may experience developmental delays, intellectual disability, speech challenges, and other medical complexities. Each individual’s experience is unique, and ongoing research is helping doctors and scientists better understand the condition and potential treatments.

One of our own Southern team members, Derek Thompson, has a child living with CHAMP1. Their family, like many others, is committed to helping spread awareness so that more families receive answers, support, and hope for future breakthroughs.

Organizations like the CHAMP1 Research Foundation are working to advance research, support affected families, and build a stronger global community around this rare disorder.

You can learn more about CHAMP1 and the work being done to support families and research efforts here:

• CHAMP1 Research Foundation: https://champ1foundation.org/about/

To hear directly from a family living with CHAMP1, you can also watch this short video:

https://www.youtube.com/watch?v=br07RZem-_4

Every conversation, share, and moment of awareness helps move research and understanding forward.

On March 20, we stand with families affected by CHAMP1 and help shine a light on a condition that deserves greater awareness.