Nancy Leib Kessler is exceptional: Fundraising, Sibling, Advocating.  Do Frazier and come to #SRFConf, #S10e151

📝Full show notes: https://curesyngap1.org/podcasts/syngap10/ Census is at 1,497! Syngap.Fund/Census Fundraising Season! Gala is tonight in NJ! Syngap.Fund/CLG4 #NLKrox  - UFD Tech, $52,094  - Scramble, $28,000  Current Efforts:     - Coast2Coast Challenge $42,691 Syngap.Fund/C2C     - Missense Account of the Fund $23,684 https://secure.givelively.org/donate/syngap-research-fund-incorporated/missense-fund    - Charmander $10,585 https://secure.givelively.org/donate/syngap-research-fund-incorporated/running-for-charmander   - Emmy $8,173 https://secure.givelively.org/donate/syngap-research-fund-incorporated/save-emmy-s-future-fund-syngap1-research  ONLINE SHOPPINGS EBay - We have an eBay shop sell for SRF! https://charity.ebay.com/charity/i/SynGAP-Research-Fund--Inc-/171038  Amazon - https://curesyngap1.org/blog/srf-amazon-storefront-to-cure-syngap1/ FRAZIER STUDY - Half enrolled! https://Syngap.Fund/Eye2 [email protected]  CHOP is 1!  - 86 (Visits) + 10 (new scheduled) + 19 (2nd) + 4 (3rd)  + 22 (follow up) = DATA  - https://x.com/cureSYNGAP1/status/1843684785740255303   School and Behaviour Go Elle! https://www.govtech.com/education/k-12/special-education-desperate-for-support-amid-severe-behaviors Do you have an advocate and a lawyer? I just got an email from an advocate.  We need to do a webinar with Jackie, Nancy, Elle and others. #NLKrox On the site Syngap.Fund/Bones & lit review Syngap.Fund/AEDeffect Syngap.Fund/Sibling with the inaugural issue from Nancy #NLKrox  Syngap.Fund/InsWin Insurance with Sara Driscoll  Vicky & Merlina are unstoppable SHER Board: https://www.linkedin.com/posts/sherusaoficial_excited-to-introduce-the-board-of-directors-activity-7250152735403040768-Q18W Colombia Meeting: https://www.linkedin.com/posts/victoria-arteaga-26913433_raredisease-patientsfirst-collaboration-activity-7246975509358612480-InHP  Cafe SYNGAP1 is up to 20!  Syngap.Fund/Cafe  Conference - Conference is 47 days away Agendas are up! https://curesyngap1.org/events/conferences/syngap1-conference-2024/ Register now - https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2024-hosted-by-syngap-research-fund-srf Book a room - https://bookings.omnihotels.com/event/los-angeles-california-plaza/2024%20SRF-SLC6A1-Connect-and-Cure-GABA-A Industry News - Lundbeck is back into the rare epilepsy space through the acquisition of Longboard for the drug bexicaserin https://www.linkedin.com/posts/anamingorance_lundbeck-signs-25b-check-for-longboard-activity-7251598931069960192-ytkb  MNDU3 re https://pubmed.ncbi.nlm.nih.gov/38967915/ https://www.biospace.com/drug-development/7-children-receiving-bluebirds-gene-therapy-developed-blood-cancers-study RESEARCH UPDATE There are 303 papers on or related to SYNGAP1 since 1998, but 45 of those are in 2024! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2024&sort=pubdate&timeline=expanded So much to note, Bateup and Silverman with mice, Vanderhaeghen on SRGAP-2, CHOP on EEG… https://www.cell.com/neuron/fulltext/S0896-6273(24)00645-7 VOLUNTEER  https://curesyngap1.org/volunteer-with-srf/ FUNDRAISE https://syngap.fund/FR - https://curesyngap1.org/srf-fundraising-resources/ now including a webinar from the greats!  CFC: #33321 https://curesyngap1.org/srf-cfc-syngap1-combined-federal-campaign/ SOCIAL MATTERS - AMPLIFY SRF TO MAKE SURE FAMILIES FIND US  - 1,200 YouTube.  https://www.youtube.com/@CureSYNGAP1   - 3,818 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ - 11,889 Twitter https://twitter.com/cureSYNGAP1 - 47k Insta https://www.instagram.com/curesyngap1/ - 442 TikTok https://www.tiktok.com/@curesyngap1 NEWLY DIAGNOSED? New families have resources here! https://syngap.fund/Resources  Podcasts, give all of these a five star review! SRF Apple Podcast Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917Episode 151 of #Syngap10 - Friday, October 18th, 2024 #epilepsy #autism #intellectualdisability #id #anxiety