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Over 1200 families are caring for a loved one with the rare disease ”SynGAP” resulting from a variant of the SYNGAP1 gene. This 10 minute weekly podcast is for them. A quick summary of the latest news in the space. The host is Mike Graglia, co-founder & managing director of the SynGAP Research Fund. SRF is a parent-led, all volunteer public charity in the US that strives to accelerate research into treatments for SYNGAP1 so that we can help our loved ones in a timeframe that matters. Learn more at https://www.syngapresearchfund.org/
Episodes
Friday Jan 10, 2025
Friday Jan 10, 2025
Friday, January 10, 2025
NEWS
- Census = 1,530! https://cureSYNGAP1.org/Census
- https://cureSYNGAP1.org/NL42
- All 2024 Science Conference videos (27 total) are now on our website and organized in this blog: https://cureSYNGAP1.org/SC24
- Pods, listen to this: https://curesyngap1.org/podcasts/syngap1-stories/zoe-bailey/
AES
JW - Everybody who was at AES felt the temperature change. Things are getting real and timelines are moving faster. Our job now is to convince donors that we need more fuel in the tank so we don’t miss opportunities indicative in families that this is no longer one day, but this is soon and they need to get ready.
Veronica Hood: “Disease Modification is on the Horizon for DS” (and the rest of us!) https://dravetfoundation.org/spotlight-on-dravet-insights-from-the-2024-american-epilepsy-society-meeting/
STUDIES AND TRIALS ARE HAPPENING NOW
Rochester, Eye Tracking, Sleep. Please sign up via link below and listen this from Peter: https://x.com/phalliburton/status/1873581064788336988 then start signing up…
https://docs.google.com/spreadsheets/d/1oQLNi85AUbISmcW0KbsgGn4cBK_4MNuvwGlKUUKLyIQ/
FUNDRAISING
- Coast2Coast Challenge $338,280 Syngap.Fund/C2C
- FUNDRAISE https://syngap.fund/FR
- Go Nikolas! $3,780 https://secure.givelively.org/donate/syngap-research-fund-incorporated/nikola-s-fundraiser
- #Sprint4Syngap is launching… https://secure.givelively.org/donate/syngap-research-fund-incorporated/sprint4syngap-2025
VOLUNTEER SPOTLIGHT:
Ed Gabler https://curesyngap1.org/team/leadership-team/ed-gabler/
RESEARCH UPDATE
There are 312 papers on or related to SYNGAP1 since 1998, but 54 of those are in 2024! So far 0 for 2025.
https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2024&sort=pubdate&timeline=expanded
CONFERENCE
Pre-register now: December 4 & 5 – https://cureSYNGAP1.org/Pre25
VOLUNTEER
https://curesyngap1.org/volunteer-with-srf/
SOCIAL MATTERS
- 1,250 YouTube. https://www.youtube.com/@CureSYNGAP1
- 3,899 LinkedIn. https://www.linkedin.com/company/curesyngap1/
- 11,688 Twitter https://twitter.com/cureSYNGAP1
- 47k Insta https://www.instagram.com/curesyngap1/
- 464 TikTok https://www.tiktok.com/@curesyngap1
NEWLY DIAGNOSED?
New families have resources here! https://syngap.fund/Resources
Podcasts, give all of these a five star review!
https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917
Episode 157 of #Syngap10
#CureSYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1
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