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

- https://syngap.fund/sprint

- 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 Info@SyngapResearchFund.org [

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 96 of #Syngap10 - March 6,  2023 

#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat