Watch her movie, Celebrating Caren!
Raising children living with SYNGAP1-Related Disorders is challenging to say the least. Being the caregiver to adult patients requires an entirely different toolkit! CURE SYNGAP1 has created this page to help support caregivers of adult Syngapians. We encourage and appreciate input from those already on this journey. Let us know what you’ve learned and what knowledge we can impart to others to smooth their path even a little bit.
CURE SYNGAP1 Webinars and Blogs
- Long Term Planning for SYNGAP1 Patients: It’s never too soon (blog post)
- More of Everything: One mom’s journey parenting her son with SYNGAP1-Related Intellectual Disability (webinar)
- Diapers & Pull Ups for Older Kids: A Mom’s Experience (blog post)
- Melissa’s Story (blog post)
- Your teenager was just diagnosed with SYNGAP1, processing through a new lens (webinar)
- Consider IUDs in Teens with Disabilities for Menstrual Management (blog post)
- What’s the Life Expectancy of Someone with SYNGAP1 (blog post)
- EnABLEing Financial Security for your Syngapian – Setting up a 529 ABLE Savings Plan! (webinar)
- Another Study suggests SYNGAP1 Rescue is possible (blog post)
- A SYNGAP1 Diagnosis: Charlie’s Story (blog post)
- Severe Behaviors and Advocacy (webinar)
CURE SYNGAP1 Grants and Studies
- Grant 2023.12: Multidimensional assessment of SYNGAP1 outcomes in adults – Dr. Danielle Andrade, University of Toronto
- Study: Understanding SYNGAP1 in Adults – Dr. Danielle Andrade, University of Toronto
- Estudiar en español: Entendiendo SYNGAP1 en Adultos – Dr. Danielle Andrade, University of Toronto
- SYNGAP1 Clinical Spectrum in Adults – Presentation by Dr. Danielle Andrade in Nashville at the SYNGAP1 Conference, hosted by SRF
Caring for Adults with a Rare Epilepsy
VIPrareCARE.com and the C.A.R.E. Binder were proudly developed in collaboration with the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome Foundation, TSC Alliance and other organizations who support families like yours and was made possible through UCB funding and partnership.
Caring for Adults with a Rare Epilepsy – Sibling Companion Guide
The C.A.R.E. Binder Sibling Companion Guide is a resource aimed to help support adult siblings or others who may temporarily or permanently assume the role of primary caregiver for an individual with a rare epilepsy.
We’d love to hear your feedback on the C.A.R.E. Binder. Please click here to share your insights.
¡Tanto la carpeta C.A.R.E. como la Guía complementaria para hermanos ahora están disponibles en español!
Meet a few of our Adults Living with SYNGAP1
Left to Right, Top to Bottom, please meet Caren, Sofia, Jadyne, McKaela, Matthew, Libby & Espy, Brian, Ashlee, Patrick, Elise, Michael, Jaxon (seated), Mabry, Andrew, Laré, Charlie, Story, and Melissa. Click on their name for their Warrior Story!
