SynGAP10 weekly 10 minute updates on SYNGAP1
Business:Non-Profit
OUR LEADERS ROCK
- Thank you to the US Board https://www.syngapresearchfund.org/home/our-team/meet-the-team-board-of-directors
- Thank you to the UK Trustees https://www.syngapresearchfund.org/home/our-team/team-srf-united-kingdom
- Thank you to the EU Board https://www.syngapresearchfund.org/home/our-team/team-srf-eu
- Thank you to Fondo Syngap https://www.syngapresearchfund.org/home/our-team/fondo-de-investigacion-syngap
PROBABLY GENETIC IS WORKING!
- https://syngap.fund/maybe - https://symptom-checker.probablygenetic.com/syngap
WEBINARS
- Dr. Rumbaugh “SYNGAP1 Splice Forms: Implications for understanding the disorder and development of therapies” https://syngap.fund/Splice - Thursday, June 2nd - 10am PT/1pm ET/ 6pm BST
- Lukas “Finding patients with Probably Genetic” https://syngap.fund/PG - Thursday, June 9th @ 9am PT/ Noon ET/5pm BST
- Dr. Harris “Discussing #SYNGAP1 Related Developmental Disorders” https://syngap.fund/Holly was great, watch the recording!
FUNDRAISERS
- MDBR: Join us and secure $30k matching funds https://syngap.fund/SRFMDBR22
- MICE: Help us Make 2! https://syngap.fund/2mice
- MIKE: I’m matching all donations in May! https://www.facebook.com/donate/1933159523538117/1611962155842267
- YOU: Remember to use your birthday on Facebook to do an SRF fundraiser! You get a gift card to the SRF shop as a thank you! https://www.facebook.com/cureSYNGAP1/fundraisers
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 - Stay tuned
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 62 of #Syngap10 - May 28, 2022
#F78A1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration
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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