Nancy Kessler, SRF BOD member, talks about her sister, Caren, the oldest known person living with SYNGAP1 at age 67. A fascinating story – check links in show notes for even more of her story!
Show Notes:
Nancy Kessler is an SRF BOD member, an active volunteer & advocate, and has hosted the SRF Gala honoring her sister Caren Leib for three years, including coming up on October 21, 2023. Caren is the oldest known person diagnosed with SYNGAP1. It is impossible to do justice to her 67 years on this planet, but luckily, Caren starred in her own movie, and Nancy has shared numerous other stories about her sister’s life. We hope you enjoy this unique episode, then check out the links below to learn even more about this family that is so special to the SynGAP Research Fund community.
Nancy’s SRF Bio
Caren’s Warrior Story
Celebrating Caren – 15-minute movie; 2-minute trailer; press release;
Video of event held to launch Celebrating Caren
Meeting Caren–Interview with SRF’s Jess Duggan Blog post (Jess’s SRF Bio)
SRF Gala honoring Caren Leib – 2023 webpage; 2022 videos #1 & #2; 2021 summary;
Happy 65th Birthday Caren! – Blog Post
Follow Nancy:
Follow Ashley Frye:
Nathan’s Warrior Story
SYNGAP1 Stories Episode 001 – Ashley Frye
SRF & SYNGAP1 Info:
What is SYNGAP1?
Syngap Research Fund – https://syngapresearchfund.org
Donate – https://Syngap.Fund/Donate
SYNGAP1 & Epilepsy
Why Getting a Genetic Diagnosis Matters
How to Get Free Genetic Testing
Special Needs Trusts
Connect with SRF (@curesyngap1):
SYNGAP10 Weekly Video Podcast w/ Mike
SynGAP Research Fund Apple Podcast Channel
SYNGAP1 Conference 2023, hosted by SRF – Registration
Wednesday SRF Family Zoom Meeting:
Syngap.Fund/SRFfam Meeting ID – 972 0059 2178 Passcode – 848417
Comments: [email protected]
Music: In the Forest… by Lesfm from Pixabay
Episode 020 SYNGAP1 Stories, October 17, 2023
#SYNGAP1StoriesCaren #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp20 #Caren #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #CelebratingCaren #Gala
