Snyder-Robinson Syndrome

What does a cure for SRS mean? When we talk about “curing” or “finding a treatment for” Snyder-Robinson syndrome (SRS), we mean specifically finding a remedy that will alleviate the medical complexities and symptoms caused by SRS. SRS is caused by a mutation in the SMS gene, which renders the gene unable to do its [...]

I recently watched the movie “Extraordinary Measures,” which is based on a true story about a family desperately searching for a cure for their children’s rare disease. I was riveted by how closely the plot mirrored my experience as a parent of a child with a rare disease. Although the entire movie resonated with me, [...]

A new pest control company came today to give an estimate. My son and I were the only ones home at the time. My son is 8 years old and was born with a rare genetic condition called Snyder-Robinson syndrome. Fewer than 30 people have ever diagnosed with this disease. I usually do not explain [...]

I have three children– boy, girl, boy. The oldest is 13. When he was 8, we moved him a few miles from his home into a new home. His bedroom in the new home is adjacent to a cemetery that’s over 200 years old. My older son hadn’t wanted to move. He didn’t want to [...]