September 17, 2021
This was episode 27 of #Syngap10 - September 17th, 2021
#SYNGAP1 #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAP #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics #epilepsy #autism #geneticcounseling #raredisease #Podcast #SYNGAP10
September 10, 2021
#SYNGAP10 - Episode 26 - September 10th, 2021 - The future is coming, let’s build it!
A wonderful letter from a parent “on an island” that reminded us of the https://Syngap.fund/lens with http://joashline.com/ made my week.
Digital Lighthouse concept in the 12 Commandments Interview with Effie: https://effieparks.com/podcast/episode-094-mike-and-nasha
First principles, we are here to change the future and help each other.
The future is coming: Invitae & Ciitizen
We make the future by raising funds and building community, that is happening twice over with #UFDcure Cannonball & Care Leib Gala.
Two big announcements next week!
Donate to our current effort for Clinical Trial Readiness https://Syngap.Fund/CTR
Sign up for this #podcast #SYNGAP10 here https://syngap.fund/10
This was episode 26 of #Syngap10
What is SYNGAP1? https://www.syngapresearchfund.org/home/what-is-syngap1
#F78A1 #ICD10 #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics
July 23, 2021
#SYNGAP10 - Episode 20 - July 23, 2021 - Great things afoot! Join us.
- Thank you to you know who you are, & welcome to three new families this week!
- https://syngap.fund/CTR is happening, worked on data this week
- https://ciitizen.com/SYNGAP1 sign up, we are filling cohort 3!
- Next grant on drug discovery is already in the works
- A few announcements
- Wed July 28 - San Diego, see you next week
- Sunday August 1 - Gathering in Jersey
- Tuesday August 24 - UC Davis meet the researchers
- Interested in getting a service dog? https://www.meridusk9.com
- Make sure you track us on social: @cureSYNGAP1 on all platforms
- Look for a cool podcast on August 5th with Mike & Nasha, be sure to follow OUAG: https://effieparks.com/podcast
July 16, 2021
-Working with Duke on the ORCA, let us know about your SYNGAPian here https://syngap.fund/comms
-Ciitizen, we are in the 3rd cohort, sign up quick: https://ciitizen.com/SYNGAP1
-Still fundraising for https://syngap.fund/ctr
-All social media is now on @cureSYNGAP1
-Yep, we said it, and we mean it.
-Subscribe to this podcast at https://syngap.fund/10
July 9, 2021
#SYNGAP10 - Ep. 18 - "Seizures, Communication, Behavior, Sleep, Other" Is that right?
- https://Syngap.Fund/CTR - $26k and growing.
- Birthday Fundraisers, $25 per $250, we will find and thank you!
- https://Syngap.Fund/blog - Make sure to read the latest on variants
- Events: Webinar & Meetups
- https://syngap.fund/webinar - Next week, Saturday, July 17th @ 9 Pacific.
- San Diego Family Meetup - SRF Syngap Meet-Up, July 28th @ 3 pm, Details in SRF NA Group.
- Beach Haven, NJ Meetup - August 1st 11-5, details in the SRF NY Group. Caren will come! https://Syngap.Fund/caren t-shirts.
- 121 Warriors - https://syngap.fund/warrior - Egypt, Texas, Quebec & Argentina. Great work.
- We are working on a poster for a meeting, stay tuned, we are learning it’s not easy to explain this life… a couple of stories
- Order of Symptoms
- 8 weeks from Seizure to Dx in Ireland, wow, 3.5. Great work Temple St, Dublin.
- Meds overload. Always check levels and loop with doctors…