MAST Genes Research Foundation

01/19/2024

We are proud to announce that we have joined the Rare Epilepsy Network (REN)! https://www.rareepilepsynetwork.org/

This will help us collaborate with and learn from other rare disease foundations!

11/28/2023

Give the gift of hope to rare diseases on this Giving Tuesday. https://mastgenes.org/donate

11/27/2023

https://mastgenes.org/news/new-research-partnership/

We are proud to announce that we have joined the JumpStart program with the Orphan Disease Center. The Orphan Disease center, a center within the Perelman School of Medicine at the University of Pennsylvania, works closely with patient groups and foundations, pharma and biotech, and the academic community to drive therapeutic development for rare diseases.

As part of this program, our first two research goals are:
Raise $100,000 for potential research grants
Identify 250 patients for potential future research

Donate now at https://mastgenes.org/donate

Research Partnership! We are proud to announce that we have joined the JumpStart program with the Orphan Disease Center . The Orphan Disease center, a center wi

11/27/2023

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 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...

01/13/2023

Grayson's Story

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 […]

01/13/2023

Charlie's Story

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...