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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
Tuesday Nov 26, 2024
Tuesday Nov 26, 2024
Tuesday, November 26, 2024
Annie Passed yesterday #SynGAPAngel
SRF NEWS
- Stories just keeps getting better: https://curesyngap1.org/podcasts/syngap1-stories/stacey-miller/
- New family video, use YouTube auto translate: Juliana Meza https://www.youtube.com/watch?v=NLkqswEvAQs
Two trials to consider
- https://med.stanford.edu/autism/studies/pregnenolone-randomized-controlled-trial.html age 14-25
- https://deepdeestudy.com/ list of sites: NJ & FL
Two studies we all need to sign up for
- Sign up for Frazier https://syngap.fund/eye2 https://curesyngap1.org/resources/studies/tracking-thinking-skills-and-behaviors-in-syngap1-patients/
- Citizen Health https://www.citizen.health/partners/srf
Conference - Conference is 9 days away!
- Lineup: Science Day lineup - https://x.com/curesyngap1/status/1851723428677456093
- Agendas are up! https://curesyngap1.org/events/conferences/syngap1-conference-2024/
- Thursday Reception at the Hotel: https://www.eventbrite.com/e/rare-research-reception-tickets-1003668087267
- Friday Join us for dinner! https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2024-caregiver-dinner
FUNDRAISING
- Coast2Coast Challenge $152,592 Syngap.Fund/C2C
- Minted Cards - 20% discount, 15% to SRF, code FUNDRAISESYNGAP - https://Syngap.Fund/Minted
- FUNDRAISE https://syngap.fund/FR
- CFC: #33321 https://curesyngap1.org/srf-cfc-syngap1-combined-federal-campaign/
VOLUNTEER SPOTLIGHT: Stephanie Decker
https://www.linkedin.com/in/stefanie-decker-cpa-38776696/
ZOOM BACKGROUND
https://drive.google.com/file/d/13jhPIBo-o1sHchEJz6KttocT1_h7GKZE/view?usp=sharing
VOLUNTEER
https://curesyngap1.org/volunteer-with-srf/
SOCIAL MATTERS
- 1,230 YouTube. https://www.youtube.com/@CureSYNGAP1
- 3,851 LinkedIn. https://www.linkedin.com/company/curesyngap1/
- 11,779 Twitter https://twitter.com/cureSYNGAP1
- 47k Insta https://www.instagram.com/curesyngap1/
- 456 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 155 of #Syngap10
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1
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