Rare Disease Day 2023 was epic and you should have been there. Sprint and Webinar update. #S10e96
RD Advocacy with Everylife Foundation was Epic.
– https://everylifefoundation.org/rare-advocates/rare-disease-week/
– Join us next year! Be in cool pictures like this
– https://twitter.com/rareadvocates/status/1631421473842667520
– https://twitter.com/RareAdvocates/status/1631038634936741890
– Here were our asks:
– https://everylifefoundation.org/wp-content/uploads/2023/02/ELF-FY24-Appropriations_One-Pager.pdf
– https://everylifefoundation.org/wp-content/uploads/2023/02/BENEFIT-Act_One-Pager_Feb-2023.pdf
– https://everylifefoundation.org/wp-content/uploads/2023/02/Rare-Disease-Caucus-One-Pager_2_22_23.pdf
– https://everylifefoundation.org/wp-content/uploads/2023/03/Ask4.pdf
#Sprint4Syngap
– Fundraising page: https://secure.givelively.org/donate/syngap-research-fund-incorporated/sprint4syngap-2023
– 18 Teams! Fourteen are already raising funds: Team Tavilla, Phoebe, Rocco, Emma Mae, Teddy, Reef, Gracyn, Andrew, Naya, Hope4Hadley, Kai, Saydee, Lizzy, Allison, Patrick.
– Remember, there is an adaptive bike in play!
– New family has an event to go to… COMMUNITY
Amazing Webinars
– From the EU this Thursday: https://www.syngapresearchfund.org/webinars/73-linking-syngap1-with-human-specific-mechanisms-of-neuronal-development
– Jeff Coller – mRNA – March 16th https://www.syngapresearchfund.org/webinars/68-harnessing-messenger-rna-metabolism-for-the-development-of-precision-gene-therapy-syngap1
– Jillian McKee – April 27th – https://syngap.fund/mckee
Ciitizen SYNGAP1 count is at 209! Sign up or Update your Ciitizen Records
– Sign-UP https://ciitizen.com/syngap1
– Sign-IN https://app.ciitizen.com/
Listen to #S10e95
There is so much work to do, volunteer [email protected] [
This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here
– https://www.syngapresearchfund.org/syngap10-podcast
Apple podcasts:
Episode 96 of #Syngap10 – March 6, 2023
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
