The Cure CERT1 Podcast

We're back with some serious encouragement to enroll in our upcoming CERT1 Natural History Study!

Please email us at [email protected] for any questions.

Want to share your story? please go to: https://lottieslight.org/share/ to share your child's photos and story and we will post it soon to instagram and facebook.

Referenced in this episode: the SYNGAP1 podcast: https://open.spotify.com/episode/66uv1u9CtFrubef1yIlvb2?si=2pr9Ce9lTJi50XBAhS-C4Q&t=215&pi=T1SIVGQqSIGVc&nd=1&dlsi=23a1559804884b96

reach out to Kelly to register for the Natural History Study AND reach out regarding the stipend for travel for the Natural History Study

[email protected]

and her number is: 312-227-6120

September 21, 2025

We are back with a new episode, and lots of updates! Episode 4 covers volunteer and fundraiser highlights, a recap of our CERT1 Splash success, spotlight of our 1st annual CERT1 consortium, and information/resources on research and registration efforts. Featured links below!

>> To register: https://lottieslight.org/register

>> To get in touch with the researchers and enroll in their study, we will connect you! Email us at [email protected]

>> To volunteer: https://lottieslight.org/volunteer

>> Read Brantley's story: https://www.facebook.com/share/16rqWCntjt/?mibextid=wwXIfr

>> CERT1 SPLASH 2025 (give to our existing fundraiser, or create your own page to host your own event!) : https://givebutter.com/CERT1Splash2025

April 23, 2025 – Podcast 3 REGISTER WITH OUR FOUNDATION (CERT1 FAMILY, FRIENDS, & SUPPORTERS): https://lottieslight.org/register/ VOLUNTEER YOUR TIME AND TALENTS: https://lottieslight.org/volunteer/ CONSORTIUM Hear from the lead CerTra Syndrome (CERT1) researchers SUMMER FUNDRAISER Cert1 Splash Dates and Details coming soon NEWLY DIAGNOSED? Resources for families here: https://lottieslight.org/newly-diagnosed/ Episode 3 of #TheCureCert1Podcast #CureCERT1 #CERT1 #CerTraSyndrome #CureCerTra #LottiesLight #IlluminateACure #RareTogether #epilepsy #autism # intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #LottiesLightFoundation #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #COL4A3BP

Wednesday, March 6, 2025 – Podcast 2

RARE DISEASE MONTH CERT1 STORIES – Thank you Javier, Willy T, Harris, Andrew, Emily Norah, Emily, Gideon.

See their stories on Facebook: https://www.facebook.com/lottieslight

See their stories on Instagram: https://www.instagram.com/lottieslightfoundation/

SHARE YOUR STORY: https://lottieslight.org/share/

REGISTER WITH OUR FOUNDATION (CERT1 FAMILY, FRIENDS, & SUPPORTERS): https://lottieslight.org/register/

VOLUNTEER YOUR TIME AND TALENTS: https://lottieslight.org/volunteer/

PODCAST PRODUCTION: Thank you Keylon Almond and Dana Wander

CONDOLENCES to the loved ones of Mary Lou Bobey, a great grandmother of one of our CERT1 kids. Thank you to those who donated to Lottie’s Light Foundation in her honor.

CONSORTIUM coming soon either My 2 or 3- Hear from the lead CerTra Syndrome (CERT1) researchers

SUMMER FUNDRAISER Cert1 Splash Dates and Details coming soon

NEWLY DIAGNOSED?

Resources for families here: https://lottieslight.org/newly-diagnosed/

Episode 2 of #TheCureCert1Podcast

#CureCERT1 #CERT1 #CerTraSyndrome #CureCerTra #LottiesLight #IlluminateACure #RareTogether #epilepsy #autism # intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #LottiesLightFoundation #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #COL4A3BP

Wesley and Samantha Rogers will be hosting regular podcasts in hopes to keep all those in the CERT1 community up to date regarding happenings at Lotties Light Foundation. We hope that together, we will illuminate a cure for all those affected by CERT1 or CerTra Syndrome. This is our newsletter to you. Please feel free to reach out to us if you have questions regarding this information or want to add your input. Thank you!