Is It Genetic? My 40-Year Journey of Misdiagnoses for My Son

• By: Ellen Feldman Arc of New York
• January 2nd, 2023
• co-occurring conditions, community support system, diagnosis, genes, genetic testing, incidence, rare genetic disorder, survey, SYNGAP1, testing, treatment trials, Winter 2023 Issue
• 3265    1

Forty years ago, my son Matthew was born. At the time of his birth, he had no apparent health issues. We began noticing that he wasn’t developing like a neuro-typical child when he wasn’t hitting milestones like rolling over. Since then, we have gone through countless tests and been given...

Scientists Want to Know Your Opinions About Participating in Research

• By: Autism Science Foundation
• October 1st, 2019
• clinical trials, Fall 2019 Issue, research, survey
• 1638    1

Poor or slow recruitment into research studies has a negative impact on research discoveries and shorten patient lives. There are lost opportunities for new discoveries, and evidence-based resources and services are delayed. Funding organizations and researchers need to come up with creative...