MAST Genes Research Foundation

https://mastgenes.org/news/new-patient-list-in-redcap/

Let’s get counting! Our goal is to connect families with each other and to fuel research. To get started, we need to know how many of us there are. Do you want to connect with other families and be counted?

Having a critical mass of potential patients is key to attracting research interest. We are not starting a formal patient registry at this time, but we have started a patient list. Joining the patient list is one of the most important steps a family can take to support future research into the MAST family of genes.

Join the Patient List
https://redcap.mastgeneslist.org/surveys/?s=TD9LPM9CE89NXRCT

New Patient List in REDCap – MAST Genes Research Foundation New Patient List Let’s get counting! Our goal is to connect families with each other and to fuel research. To get started, we need to know how many of us there are. Do you want to connect with other families and be counted? Having a critical mass of potential patients is key to attracting research...

Grayson's Story

Grayson's Story - MAST Genes Research Foundation Grayson is a 6.5 year old boy, who at 24 days old, seemed like he would soon be on his way home from the neonatal intensive care unit, until the seizures started. That tiny baby was having so many tonic-clonic seizures, and required so much medication to stop them, that he had to be put […]

Charlie's Story

Charlie's Story - MAST Genes Research Foundation Charlie is an 11-year-old boy who seemed like every other little baby, like every other toddler, like every other 2-year-old boy. And then the seizures started. Nine years later, Charlie has profound intellectual and developmental disabilities. He has tried almost every medication and treatment opti...