Read Jackie’s article on profound autism, be grateful she is an SRF Leader.
helenjournal.org/april-2024/a...
Watch Brett’s 2 min talk on his son, he’s on your team too.
x.com/UFDTech/status/17851119...
Look at all these families that raise a quarter million dollars via #Sprint4Syngap
2024 syngap.fund/sprint24 - givebutter.com/ALjJXJ
- $243k, 844 donors
- Kaia’s event was wonderful curesyngap1.org/syngap-warrio...
- 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. www.terrapinn.com/conference/...
- This week Heather Mestemaker was at the GG DDC. globalgenes.org/event/rare-di...
- Next week I’ll be at Milken Global, it takes a team. milkeninstitute.org/events/gl...
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! syngap.fund/Resources
SOCIAL MATTERS
- 990 KZitem. / @curesyngap1
- 3,552 LinkedIn. / curesyngap1
- 9,852 Twitter / curesyngap1
- 49k TikTok / curesyngap1
Podcasts, give all of these a five star review!
SRF Channel - podcasts.apple.com/us/channel...
Episode 140 of #Syngap10 - May 2, 2024
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1
Негізгі бет Who will fight for our kids when we aren’t there? SRF and your crew.
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