Mike Graglia, CURE SYNGAP1 Founder, CEO, & SYNGAP1 Dad to Tony shares a very personal family update.

Show Notes:

"When your kids are tiny, we've all said it ... 'Nobody can take care of this kid but us!' And we believed that ... until about a year ago."

Mike Graglia, Co-Founder and CEO of CURE SYNGAP1, and Dad to Syngapian Tony, joins Jo to talk about the latest chapter in raising Tony, diagnosed with SYNGAP1-Related Disorders in 2018. It's not always easy to talk about the difficult times in our rare lives, but that makes it even more important to do so. If you've had similar experiences, please email us at ed@cureSYNGAP1.org.

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Tony’s Warrior Story⁠

Connect with Mike:

• ⁠mike@cureSYNGAP1.org
• Mike Graglia’s Bio⁠
• Ashley Evans's Bio
• ⁠Mike & Ashley’s Story⁠

Support Mike and Ashley by donating to the upcoming Night of Impact Gala in San Francisco - cureSYNGAP1.org/SF26

Related SYNGAP1 Stories Episodes:

• SYNGAP1 Stories ⁠⁠⁠⁠⁠⁠⁠Episode 002⁠⁠⁠⁠⁠⁠⁠ - Mike Graglia
• SYNGAP1 Stories Episode 011 - Ashley Evans
• SYNGAP1 Stories ⁠⁠⁠⁠⁠⁠⁠⁠Episode 016⁠⁠⁠⁠⁠⁠⁠⁠ - Mike Graglia

CURE SYNGAP1 2026 Conference in Denver - pre-register to receive updates

Connect with Jo:

• ⁠⁠⁠Andrew's Warrior⁠⁠
• ⁠⁠jo@cureSYNGAP1.org⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠Jo's CURE SYNGAP1 bio⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠Instagram⁠⁠⁠⁠
• ⁠⁠⁠Jo's personal blog page⁠⁠

CURE SYNGAP1 & SYNGAP1-Related Disorders Info:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

• ⁠CURE SYNGAP1⁠ fka SynGAP Research Fund⁠⁠ (SRF)
• ⁠⁠⁠⁠⁠⁠⁠What are SYNGAP1-Related Disorders?⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠How Many People Have SYNGAP1?⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP1 Resources for Newly Diagnosed Families⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Donate to CURE SYNGAP1⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠CURE SYNGAP1 Brochure⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠CURE SYNGAP1 Fundraising Resource Page⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Wednesday Warriors⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Supporting SYNGAP1 Siblings⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP1 & Epilepsy⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠Addressing the Symptoms of SYNGAP1⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠Why Getting a Genetic Diagnosis Matters⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠CURE SYNGAP1's Medical Considerations Document⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

SYNGAP1 Studies and Trials:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

• ⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP1 Studies⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP1 ProMMiS⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford
• ⁠⁠⁠SYNGAP1 ⁠⁠⁠Clinical Trials⁠⁠⁠⁠⁠⁠

Other Episode Links:

• Lakemary Center https://lakemary.org/

⁠Connect with CURE SYNGAP1⁠ (@cureSYNGAP1):

• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
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• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠YouTube⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠X/Twitter⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
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• ⁠⁠CURE SYNGAP1 Podcast⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠w/ Mike
• CURE SYNGAP1 ⁠⁠⁠⁠⁠⁠Apple Podcast Channel⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

⁠⁠Syngap Global Network⁠⁠

Comments: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ed@cureSYNGAP1.org⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Music: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠In the Forest... by Lesfm from Pixabay⁠⁠⁠

Episode 041 - SYNGAP1 Stories, May 15, 2026

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