SynGAP10 weekly 10 minute updates on SYNGAP1
Business:Non-Profit
CHECK OUT THIS CONFERENCE: https://syngap.fund/treat
PROBABLY GENETIC IS WORKING!
- Assessment: syngap.fund/maybe - https://symptom-checker.probablygenetic.com/syngap/
- Testing: syngap.fund/ambit - https://www.ambitcare.com/registration-syngap-research-fund
- Webinar: https://syngap.fund/PG - Thursday, June 9th at 9am PT/Noon ET/5pmBST
DON’T MISS OUR NEWSLETTER
- June 2022 https://mailchi.mp/syngapresearchfund.org/june22
- Sign up https://www.syngapresearchfund.org/families/newsletters
- Please make sure we are not going to Spam
#FATHERHOOD & RARE
- Sign up for the EF Panel: https://bit.ly/efmen - https://us06web.zoom.us/webinar/register/WN_Iv8d06ffT_uDbRDXAAWKOg
- SFN Dad To Dad Podcast: https://www.spreaker.com/user/specialfathers/dad-to-dad-204-mike-graglia
LINKS FORM EF #PIPELINECONFERENCE 2022
- Agenda: https://www.epilepsy.com/research-funding/pipeline-conference
- Kayak study for #SCN8A: https://kayakstudy.com/
- #Prax562: https://www.globenewswire.com/news-release/2022/01/18/2368578/0/en/Praxis-Precision-Medicines-Announces-Publication-of-Preclinical-Data-Highlighting-Differentiated-and-Potent-Antiepileptic-Activity-of-PRAX-562.html
- $PRAX https://seekingalpha.com/news/3845864-prax-stock-on-watch-as-lead-asset-fails-in-depression-trial
- Engrail: https://www.businesswire.com/news/home/20220607005544/en/Engrail-Therapeutics-Announces-Positive-Results-of-ENX-101-Phase-1b-Clinical-Study-and-Prepares-for-Initiation-of-ENACT-Phase-2-Trial-in-Focal-Epilepsy
FUNDRAISERS
- MDBR: Join us and secure $30k matching funds https://syngap.fund/SRFMDBR22
- MICE: Help us Make 2! https://syngap.fund/2mice
EVENTS
June 11 in Philly - Support our team https://syngap.fund/srfmdbr22
June 25 in DFW - Join us for a family meeting and hear from Dr. Perry. Link soon.
September 12-14 in San Diego - #GlobalGenes Meeting. Link soon.
October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala
October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap
November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree
December 1 in TN - Syngap Science Meeting - https://syngap.fund/treat
EVERYONE SHOULD SIGN UP FOR CIITIZEN ASAP: https://www.ciitizen.com/syngap1/
This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast
Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818
Episode 63 of #Syngap10 - June 7, 2022
#F78A1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration #EpilepsyFoundation #Engrail #Praxis #Neurocrine #ProbablyGenetic #AmbitHealthcare
BONKERS week. #S10e62
Thank Goodness we have a dynamic team! Some personal news. #S10e61
Major Preprint from Quadrato & Coba, Rumbaugh working with Praxis, Keep Fundraising! #S10e60
We raise funds, make mice & they make preprints! It’s working! #S10e59
Praxis Announces SynGAP Program & #Sprint4Syngap is a global success!. #S10e58
We need funding, companies and doctors. #S10e57
Why will companies work on #SYNGAP1? #S10e56
#Sprint4Syngap is just 3 weeks away! #S10e55
LOTS OF NEWS - 1055 Patients, it’s #SyngapCensus Day! #S10e54
Happy Epilepsy Awareness Day! #S10E53
We are starting to find lots of adult patients, what now?
Putting this work in perspective…
Another week in 5th gear, buckle up
Rare Disease Day is Monday! And here at SRF we can feel it all happening…
Happy National Caregiver Day!
It’s all coming together - data, trials, research. Time is now to join in!
You can’t do this alone, don’t try. But do Plan. Lots of planning from SNTs to Brain Donation to Service Dogs.
Old School Syngap10 - Lots of great content in 10 minutes. Fundraising. Blogs. Webinars. Patient stories. Ciitizen.
Special Double Episode: Understanding your particular variant and what to do about it (Hint: #iPSC)
Stoke Therapeutics & Acadia Pharmaceuticals are working on SYNGAP1 #S10e43
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