Talking to families with 2 year olds, 3 Webinars not to miss, and Sprint4Syngap, Stoke & Praxis Updates, GG Next 2023 Report – #S10e97
Community with families
– Amazing time with the Hardings, thank you. https://www.facebook.com/monica.cruzharding/posts/pfbid02WPzjhp3jSMtetB2vHCvMDtyUzqFD2SdP6Ebi68XF8TZdqhvJoqMywVWASp4x8mVUl
– Hattie and Tony at the pool with the Fosters
– Foster movie link on website: https://www.syngapresearchfund.org/patient-stories/hattie/
– Foster press – 3/13/23 – KMBC News: https://www.kmbc.com/article/we-re-so-hopeful-local-girl-fighting-rare-disease/43279999/
– 2/28/23 – Fox4KC https://fox4kc.com/news/kansas-city-area-family-helping-spread-awareness-after-daughters-rare-disease/
– Throw them in occasionally.
Talking to 2 year olds
– LA, NorCal, DC, NY – https://www.syngapresearchfund.org/post/140-my-reema-syngap1
– You are fortunate to know.
– Your future will be different and we have written that story, see McKee and Brimble
– https://twitter.com/JillianLMcKee/status/1600202742269501442
– https://twitter.com/cureSYNGAP1/status/1636177159059574784
– We chose between Love and Fear, Hope and Despair https://www.demellospirituality.com/love-or-fear/
– Choose hope, love you kiddo by joining SRF and working with us for a better future.
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 211! Sign up or Update your Ciitizen Records
– Sign-UP https://ciitizen.com/syngap1
– Sign-IN https://app.ciitizen.com/
Stoke and Praxis Updates
– Stoke got permission to up the dose in the US, good news for patients and a sign that the FDA comes around. https://investor.stoketherapeutics.com/news-releases/news-release-details/stoke-therapeutics-announces-fda-will-allow-administration
– Praxis had good news on ET and will go to Phase 3, which is good, if you remember what happened with their last drug. https://investors.praxismedicines.com/news-releases/news-release-details/praxis-precision-medicines-announces-topline-results-essential1
– See Next 2023 from Global Genes, industry updates start on page 50 https://20173539.fs1.hubspotusercontent-na1.net/hubfs/20173539/2023%20NEXT%20Report.pdf
#Sprint4Syngap
– Fundraising page: https://secure.givelively.org/donate/syngap-research-fund-incorporated/sprint4syngap-2023
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
