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