Science + Love = CURE Podcast
Latest Episode
March 2024
Here’s another great way to stay current with all the latest updates on STXBP1-related disorders even from your mobile device.
Each podcast episode is a short 10-minute update for the STXBP1 Community from the STXBP1 Foundation.
It’s easy to watch the video podcast on our YouTube Channel or as indexed below.
And, the series is available as an audio version as well on Apple Podcast .
2024
March: White House Forum on Rare Diseases, a zebra fish research grant, and ways you can participate in our census, annual conference, and UPenn's Million Dollar Bike Ride with Lulu's Crew
February: Uplifting Athletes Young Investigators Draft Award and an interview with Dr Zachary Grinspan of Weill Cornell
January: Kick-off 2024 with an interview of Dr Ingo Helbig on the ENDD clinic at CHOP and the STARR Natural History Study for STXBP1-related disorders
2023
End of Year Wrap-Up: “Give with Your Heart - Be the Love” Fundraising campaign for Giving Tuesday, American Epilepsy Society (AES) Debrief, New to STXBP1 Research: The Nonsense Mouse Model, STXBP1 Contact List, and STXBP1 Global Connect
September: Annual STXBP1 Move To Cure , FDA Patient-Focused Drug Development Meeting, STXBP1 Q3 2023 Census, STXBP1 Foundation STARR Natural History Study, and more.
August: Upcoming Externally-Led Patient Focused Drug Development Meeting with the FDA in October, FDA Listening Session April 2022 report, Million Dollar Bike Ride Grants, Stanford Clinic for STXBP1, and more.
July: The STXBP1 Family Summit in July, our new STARR STXBP1 Natural History Study, a call for additional Board Members, and a look forward to our annual Move-to-Cure fundraising event.
June: Million Dollar Bike Ride, Participating in Research by Donating Blood Samples, the Simons INSYNC Meeting in New York, and the STXBP1 Family Summit in July.
May: the 1st European STXBP1 Summit, Million Dollar Bike Ride, and the STXBP1 Family Summit in July.
April: the 1st STXBP1 Census, 1st European STXBP1 Summit, Million Dollar Bike Ride, the new Associação STXBP1 Brasil, and the STXBP1 Family Summit in July.
March: ICD-10 codes, STXBP1 Family Summit in July, Rare disease day, the Million Dollar Bike Ride and Lulu’s Crew.
February: Our premier episode #1 with news on the Uplifting Athletes Grant, RARE-X, the STXBP1 Fast Forward 3 year plan, and more.