From Autism to Rare Disease: Our Family’s Journey to an Unexpected Diagnosis

After being diagnosed with autism, epilepsy, global developmental delay and intellectual disability at the age of two, at 16 Andrew was diagnosed with Syngap1, a rare genetic disorder that explains his lifelong physical, cognitive, and communication challenges. We know there are more kids and adults like Andrew out there, who have Syngap1 and just don’t know it yet. By bringing awareness to this rare disease, we hope to help families and clinicians identify the Syngap patients and drive research towards successful therapeutic interventions.

Why I’m Letting My Son’s School Records Be Shared with California Concerned Parent Association

There’s panic swirling among many parents in California, after Judge Kimberly J. Mueller of the U.S. District Court for the Eastern District of California ruled in favor of California Concerned Parent Association and Morgan Hill Concerned Parent Association, granting the two non-profit parent-run groups access to nearly 10 million California student records. California Concerned Parent Association (CPA)…

She Was Me.

He was supposed to play in his first Challenger baseball game of the new season this morning, but instead we found ourselves at our local Children’s Hospital emergency room, making sure Andrew’s foot wasn’t broken. (Never a dull moment around here, that’s for sure). It was there that I first spotted them; a father and…

I’m Not Scared of Autism. I’m Scared that YOU Are.

The CDC just announced the latest autism statistics this morning. 1:68 children are diagnosed with autism. To understand the numbers, you have to understand the many variables at play. First, the data was collected in 2010 using a survey of children residing in 11 states. The previous number, 1:88, was based on a 2008 survey.…