Our CC4C supporters help provide critical resources, hope, and community to families navigating the uncharted challenges of rare diseases like Simon's.

Simon has a rare, inherited genetic disorder that affects the brain and spinal cord. It's a type of childhood dementia that causes fatal brain damage and is characterized by neurological deterioration. Since there is currently no FDA-approved treatment or cure, most patients don't live past adolescence.

Simon joined a clinical trial in 2019, which helped slow his condition significantly along with a combination of continuous therapies. But, he has been regressing in his abilities over the past two years. Simon's parents work hard every day to prevent this by helping him keep up with his current skills, along with searching for a viable treatment path for his condition.

Simon is a sweet boy with a bright light and warm smile. He enjoys shooting basketball hoops, playing on playgrounds, building with blocks, listening to stories, putting together large floor puzzles, playing disc golf with Dada, listening and dancing to music, and reviewing sign language. Simon is motivated by verbal praise, engaging eyes, and a big smile.

Every day, our families face uncertainty about their child's health, financial burdens, and isolation.

Every day, new families face an overwhelming diagnosis, unsure of where to turn. 

Your year-end gift ensures families won’t face this journey alone. With your help, we can continue offering life-changing programs, advocacy, and support to Simon's family and many more.

Together, we can make 2025 a year of hope for families who need it most. Please consider a tax-deductible donation today and help us reach our goal of raising $25,000 for CC4C's mission.