Our Story

We established the Jack Bear Foundation in 2024 following our son Jack’s diagnosis of Spinocerebellar Ataxia Recessive Type 15 (SCAR-15).

Jack was born prematurely and had an array of feeding and growth issues coupled with delayed developmental milestones. Since day one, Jack has always been a determined and unflappable little guy. We came to realize with Jack’s doctors that his motor skills, balance disturbances, gait abnormalities, feeding, and speech articulation challenges were not improving on a typical path as time went on.  At the suggestion of doctors, we enrolled Jack in Early Childhood Intervention, through which he received in-home feeding, speech, physical, and occupational therapies.

After years of specialist appointments and clear MRI scans, we were advised to seek additional genetic testing that revealed Jack had a rare gene variance on the 3rd Chromosome. Initially, we were told this was of “unknown significance,” meaning that Jack had this unique gene, but it was undetermined whether it contributed to Jack’s challenges.

As we patiently waited for more answers, the gene variance was renamed, “Rubicon,” (or RUBCN for short). After a few years, Jack was enrolled in a UK-based research study along with two other human subjects. Approximately five years after the “unknown significance” results, we were informed that genetic research advancements could confirm a direct correlation between the Rubicon gene and Spinocerebellar Ataxia Recessive Type 15, receiving our official diagnosis in late 2021.