Hello we are raising funds to go towards the research into the ultra rare condition called pobinds syndrome as our young boy billy Carry’s this rare disease and we would like to help not only him but other children with the same condition

Help Fund Research for Children with CSNK2B Neurological Disorder (POBINDS)

Children with CSNK2B neurological disorder face unimaginable challenges every day. This rare and severe genetic condition causes frequent, hard to control seizures, delayed development, low muscle tone, and significant intellectual and physical disabilities. Many children are unable to walk, talk, or eat without assistance. Most require lifelong, round the clock care.

There is no cure.

There are no targeted treatments.

And because the condition is so rare, very little research exists leaving families with more questions than answers.

Why We Need Your Help

Research is the only path forward. With proper funding, scientists can:

Study how CSNK2B mutations disrupt brain development

Work toward targeted treatments to reduce seizures and improve function

Give families hope through clinical trials and genetic studies

This research could dramatically improve quality of life for these children, helping them gain skills, reduce hospital stays, and live with more comfort and dignity.

❤️ Every Dollar Makes a Difference

Your donation helps fund the critical research needed to understand and treat this devastating condition. It brings hope to families fighting for their child’s future.

Please consider donating and share this page to help us reach others.

Together, we can spark the breakthrough these children so desperately need.

Thank you.