SRF Board member John Hill talks about grand-niece Kiera's progress, love for swimming, the upcoming Gala for SYNGAP1, and volunteering with SRF as an extended family member and a retiree.

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SYNGAP1 Stories

Syngap Research Fund, 501(c)(3)

39 episodes

4 days ago

SYNGAP1-related disorders are rare genetic disorders that affect Rainy Schlosser's daughter Hope and Jo Ashline's son Andrew. As of July 1, 2025, there are only 1,636 people in the world diagnosed with SYNGAP1. 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.

Parenting

Kids & Family

RSS

All content for SYNGAP1 Stories is the property of Syngap Research Fund, 501(c)(3) and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.

Parenting

Kids & Family

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SRF Board member John Hill talks about grand-niece Kiera's progress, love for swimming, the upcoming Gala for SYNGAP1, and volunteering with SRF as an extended family member and a retiree.

SYNGAP1 Stories

28 minutes 41 seconds

3 months ago

SRF Board member John Hill talks about grand-niece Kiera's progress, love for swimming, the upcoming Gala for SYNGAP1, and volunteering with SRF as an extended family member and a retiree.

If you liked this episode, please give our podcast 5 stars! All episodes are also available at ⁠⁠⁠⁠⁠cureSYNGAP1.org/Stories⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠.

⁠Kiera's Warrior Story⁠

Lipman Family Movie

Fifth Annual SRF Gala for SYNGAP1 – 2025⁠⁠

Donate and Tickets

Caren - oldest known person with SRD

Kathryn Helde - keynote speaker at Gala

Connect with John:

SRF Bio
Follow on ⁠⁠LinkedIn (2nd account)

Other Episode Links:

Connect with ⁠⁠⁠⁠⁠⁠Rainy:

⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠rainy@cureSYNGAP1.org⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Rainy's SRF Bio⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
Instagram - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠@Hope4theCure⁠⁠⁠⁠⁠⁠⁠⁠
YouTube - ⁠⁠⁠⁠⁠⁠⁠⁠⁠@Hope4theCure⁠⁠⁠⁠⁠⁠⁠⁠⁠
Facebook - ⁠⁠⁠⁠⁠⁠⁠⁠⁠Hope SelahMay⁠⁠⁠⁠⁠⁠⁠⁠
SYNGAP1 Stories ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Episode 028⁠⁠⁠⁠⁠⁠⁠⁠
⁠⁠⁠Rainy and Hope's Cross Country Quest⁠⁠⁠

SRF Event Links:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

SRF & SYNGAP1 Info:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

SYNGAP1 Studies and Trials:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

⁠⁠⁠⁠⁠SYNGAP1 Studies⁠⁠⁠⁠⁠⁠⁠
⁠⁠⁠⁠⁠⁠SYNGAP1 ProMMiS⁠⁠⁠⁠⁠⁠ – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford
⁠⁠⁠⁠⁠⁠⁠Citizen Health⁠⁠⁠⁠⁠⁠⁠⁠⁠
Clinical Trials⁠⁠⁠⁠⁠⁠⁠
⁠⁠⁠⁠⁠⁠⁠Frazier Eye Study⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
The EMERALD Study

More Links:

Connect with SRF (@cureSYNGAP1):

Family Zoom Meeting (bi-weekly on Wednesdays, 8PM ET):

⁠⁠⁠⁠⁠cureSYNGAP1.org/SRFfam⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Meeting ID - 972 0059 2178 Passcode - 848417

Comments: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ed@cureSYNGAP1.org⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

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

Episode 036 SYNGAP1 Stories, August 4, 2025

#SYNGAP1StoriesKiera #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp36 #Fundraising #GalaForSyngap1 #Volunteer #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSyngap1Conf #SYNGAP1Siblings #Caregiver #SelfHelp #Conf25 #Therapy