Time is Brain – SynGap Research Fund with Mike Graglia
Time is Brain: SYNGAP Research Fund with Mike Graglia
Bo Bigelow and Daniel DeFabio have started a TV channel called The Disorder Channel where you can see all their rare stories in one place. You can access the channel with a Roku or Amazon Fire TV Stick. I had the honor and opportunity to narrate one of these films, The Foundations of Rare: The SYNGAP Research Fund and that’s how I connected with my next guest.
Mike Graglia is a dad on a mission. His son is one of around 600 patients born with SYNGAP1, a rare neurological disease. Like many other rare disorders, like CTNNB1, SYNGAP1 affects the production of a protein. It’s considered a spectrum disorder because all patients aren’t affected the same way or to the same severity. After attending a Global Genes conference, Mike and his wife Ashley were inspired to turn hope into action and they founded the SYNGAP Research Fund. Their sole mission is funding research science for SYNGAP1.
EPISODE HIGHLIGHTS
Can you tell us about Tony’s rare disease and how it affects him?
When did you get Tony’s diagnosis?
When did you and Ashley decide to take action and do something when no one else was?
Can you tell me about your mission of collaboration, transparency and urgency?
What would you tell a parent who is motivated and inspired to do something like what you’re doing?
LINKS AND RESOURCES MENTIONED
https://syngapresearchfund.org/
https://syngapresearchfund.org/syngapblog
SRF – SynGAP Research Fund, Inc. YouTube
https://www.youtube.com/channel/UCtnPWPpqouMA_1UGOyu4W6A/
https://www.thedisordercollection.com/
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