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SYNGAP1 StoriesAuthor: CURE SYNGAP1, 501(c)(3) fka SynGAP Research Fund
SYNGAP1-Related Disorders are rare genetic disorders that affect Rainy Schlosser's daughter Hope and Jo Ashline's son Andrew. As of January 1, 2026, only 1,707 people in the world were diagnosed. There is no cure. In each episode of SYNGAP1 Stories, first developed by Ashley Frye and continued by Rainy and Jo, we chat with SYNGAP1 parents, volunteers, caregivers, researchers, and partners about their journey with SYNGAP1 in their lives. Their joys and successes, as well as heartaches and advice, will be discussed in this heart-warming series as we support the SYNGAP1 community. Language: en Genres: Kids & Family, Parenting Contact email: Get it Feed URL: Get it iTunes ID: Get it Trailer: |
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Mike Graglia, CURE SYNGAP1 Founder, CEO, & SYNGAP1 Dad to Tony shares a very personal family update.
Episode 41
Friday, 15 May, 2026
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.If you liked this episode, please give our podcast 5 stars!Tony’s Warrior StoryConnect with Mike:mike@cureSYNGAP1.orgMike Graglia’s BioAshley Evans's BioMike & Ashley’s StorySupport Mike and Ashley by donating to the upcoming Night of Impact Gala in San Francisco - cureSYNGAP1.org/SF26Related SYNGAP1 Stories Episodes:SYNGAP1 Stories Episode 002 - Mike GragliaSYNGAP1 Stories Episode 011 - Ashley EvansSYNGAP1 Stories Episode 016 - Mike GragliaCURE SYNGAP1 2026 Conference in Denver - pre-register to receive updatesConnect with Jo:Andrew's Warrior jo@cureSYNGAP1.orgJo's CURE SYNGAP1 bioInstagramJo's personal blog pageCURE 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 FamiliesDonate to CURE SYNGAP1CURE SYNGAP1 BrochureCURE SYNGAP1 Fundraising Resource PageWednesday WarriorsSupporting SYNGAP1 SiblingsSYNGAP1 & EpilepsyAddressing the Symptoms of SYNGAP1Why Getting a Genetic Diagnosis MattersCURE SYNGAP1's Medical Considerations DocumentSYNGAP1 Studies and Trials:SYNGAP1 StudiesSYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, StanfordSYNGAP1 Clinical TrialsOther Episode Links:Lakemary Center https://lakemary.org/Connect with CURE SYNGAP1 (@cureSYNGAP1):LinkedInFacebookInstagramYouTubeX/TwitterTikTokCURE SYNGAP1 Podcast w/ MikeCURE SYNGAP1 Apple Podcast ChannelSyngap Global NetworkComments: ed@cureSYNGAP1.orgMusic: In the Forest... by Lesfm from PixabayEpisode 041 - SYNGAP1 Stories, May 15, 2026#SYNGAP1StoriesTony #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp41 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSYNGAP1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #Volunteer #CureSYNGAP1Conf26 #Therapy #CitizenHealth #SyngapGlobalNetwork
