Who will fight for our kids when we aren’t there? SRF and your crew. #S10e140
Read Jackie’s article on profound autism, be grateful she is an SRF Leader.
https://helenjournal.org/april-2024/achieving-equity
Watch Brett’s 2 min talk on his son, he’s on your team too.
https://x.com/UFDTech/status/1785111914168594894
Look at all these families that raise a quarter million dollars via #Sprint4Syngap
2024 syngap.fund/sprint24 – https://givebutter.com/ALjJXJ
– $243k, 844 donors
– Kaia’s event was wonderful https://curesyngap1.org/syngap-warriors/kaia/
– Reef’s family also found connection by helping SRF, video coming soon.
Conferences are where we engage professional communities around SYNGAP1 & SRF.
– Last week Vicky was at WODC. https://www.terrapinn.com/conference/world-orphan-drug-congress-usa/
– This week Heather Mestemaker was at the GG DDC. https://globalgenes.org/event/rare-disease-drug-development/
– Next week I’ll be at Milken Global, it takes a team. https://milkeninstitute.org/events/global-conference-2024/program
It takes a village.
We need to support efforts to help our kids and accept that the system will always fall short, the need for a strong SRF will only grow. The more we unify, the faster it grows.
v1 Drugs – Data – Biomarkers & Endpoints
v2 now we add Improve Clinical Care (NHS Expansion & Repurposing) – Build a sustainable organization.
NEWLY DIAGNOSED?
New families have resources here! https://syngap.fund/Resources
SOCIAL MATTERS
– 990 YouTube. https://www.youtube.com/@CureSYNGAP1
– 3,552 LinkedIn. https://www.linkedin.com/company/curesyngap1/
– 9,852 Twitter https://twitter.com/cureSYNGAP1
– 49k TikTok https://www.instagram.com/curesyngap1/
Podcasts, give all of these a five star review!
SRF Channel – https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917
Episode 140 of #Syngap10 – May 2, 2024
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1
