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Over 1200 families are caring for a loved one with the rare disease ”SynGAP” resulting from a variant of the SYNGAP1 gene. This 10 minute weekly podcast is for them. A quick summary of the latest news in the space. The host is Mike Graglia, co-founder & managing director of the SynGAP Research Fund. SRF is a parent-led, all volunteer public charity in the US that strives to accelerate research into treatments for SYNGAP1 so that we can help our loved ones in a timeframe that matters. Learn more at https://www.syngapresearchfund.org/
Episodes
Sunday May 29, 2022
Sunday May 29, 2022
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
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