Building the SYNGAP1 SRF House - using the Milken Fastercures Research Partnership Maturity Model - #S10e98

Milken Fastercures RPMM

- So much strong work and thinking here!

https://milkeninstitute.org/centers/fastercures/train/toolkits/RPMM 

- Three floors: Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible. - St. Francis of Assisi 

- Cool Tweet: https://twitter.com/LindsayOkamoto/status/1639017493007335425?s=20 

 

Why we need a house?

www.fpwr.org - www.jdrf.org - www.runx1-fpd.org 

 

Press is key!  Congrats to Peggy

https://www.newsandtribune.com/news/clark_county/floyd-family-seeks-to-lessen-funding-gap-for-rare-genetic-disorder/article_d16460f4-c8f8-11ed-a60c-170e5bfff4d6.html 

 

Amazing Webinars

- Jillian McKee - April 27th - https://syngap.fund/mckee 

 

Ciitizen SYNGAP1 count is at 211! Sign up or Update your Ciitizen Records

- Sign-UP https://ciitizen.com/syngap1 

- Sign-IN https://app.ciitizen.com/

#Sprint4Syngap - 36 days, April 29, 2023

- https://syngap.fund/sprint

- Fundraising page: https://secure.givelively.org/donate/syngap-research-fund-incorporated/sprint4syngap-2023 

 

#MDBRSRF - 79 days - June 10, 2023

syngap.fund/mdbr23

 

#SyngapConf - 252 days - book now, November 30, 2023

- Conf pre-registration link: Syngap.Fund/2023conf 

- We have signed with a hotel/venue, please stay tuned for room link

- Large Latin Contingent too, just another this morning.

 

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 98 of #Syngap10 - March 23,  2023 

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