SRF Supported Publication on NET, Siblings, Webinars, Frog Video, Clinical Trial Questions… #S10e101

What’s your neuro emergency plan?https://twitter.com/cureSYNGAP1/status/1646170843503034368 Congrats to Dr. Frazier on the FIRST NET paper:  https://twitter.com/cureSYNGAP1/status/1646573476353044481  Thanks to Kevin for going to Gatlinburg - Kevin https://twitter.com/cureSYNGAP1/status/1646530060227346433 - ORCA https://twitter.com/cureSYNGAP1/status/1646212570649604097 Thanks to Brain & Life, part of AAN for this article "How Parents Advocate for Their Children with Rare Diseases” https://www.brainandlife.org/articles/after-their-children-were-diagnosed-with  Sibling day John https://youtu.be/J5oBo9zcRUE  LGS https://www.youtube.com/watch?v=kR1nWSEZPfY  Webinars McKEE 4/27 https://syngap.fund/mckee   SMITH 5/11 https://syngap.fund/smith  Ciitizen SYNGAP1 count is over 2101 - Sign-UP https://ciitizen.com/syngap1  - Sign-IN & Update https://app.ciitizen.com/ Rare News Updates 1. Hot off Presses, Stoke is talking about TANGO and mentions their SYNGAP1 work with Acadia https://knowablemagazine.org/article/health-disease/2023/hope-for-haploinsufficiency-diseases  2. SCN2A Clinical Trial Site and Video, which is very good! https://www.youtube.com/watch?v=z9SqMSO405I https://scn2aclinicaltrials.com/ 3. Frog update: See what Dr. Helen Willsey is doing here: https://youtu.be/Gp8sROAm5D8  #Sprint4Syngap - 14 days, April 29, 2023 - https://syngap.fund/sprint  - Fundraising page: https://syngap.fund/sprint23 #MDBRSRF - 56 days - June 10, 2023 syngap.fund/mdbr23 #SyngapConf - 229 days - book now, November 30, 2023 - Conf pre-registration link: Syngap.Fund/2023conf - Book hotels ASAP: https://syngap.fund/2023hotel  Remember the todos in #S10e100 - https://www.youtube.com/watch?v=CCjPkabkR1A  - Education survey https://forms.gle/YZJZmJavMNKNEBg88 - Biorepository Roadshow - https://syngap.fund/roadshow  List of biorepository collection opportunities, watch this webinar for more information see https://syngap.fund/TJB  - MED13L Foundation on April 30th, 2023 (Philadelphia, PA) - DYRK1A Foundation, June 23rd-25th 2023 (Bethesda, MD) - KDVS Foundation, July 19th-21st 2023 (Orlando, FL) - STXBP1 Foundation, July 21st-23rd 2023 (Westminster, CO) - Yellow Brick Road Project, July 30th-August 2nd (Jacksonville, FL) - (Potential) DUP15/Angelman, July 27th-29th 2023 (Nashville, TN) - (Potential) KAND, August 3rd-6th 2023 (Queens, NY) - (Potential) Global Genes, Sept 19th-20th 2023 (San Diego, CA) - IRF2BPL Foundation, Sept 22nd-23rd 2023 (Cincinnati, OH) - USP7/Prader Willi, Oct 5th-7th 2023 (Denver, CO) - TBRS Foundation, Oct 12th-14th 2023 (San Antonio, TX) - COMBINEDBrain Meeting, Oct 15th-16th 2023 (Washington DC) - ADNP Kids Research Foundation, Oct 30th-Nov 1st (Los Angeles, CA) - (Potential) Angelman Foundation, November 2023 (Orlando, FL) - SYNGAP1 Research Fund, Dec 1st-3rd 2023 (Orlando, FL) 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:  https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818 Episode 101 of #Syngap10 - April 15, 2023  #frogs #biomarkers #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat