Nancy Leib Kessler is exceptional: Fundraising, Sibling, Advocating. Do Frazier and come to #SRFConf, #S10e151
Episode Description
šFull show notes: https://curesyngap1.org/podcasts/syngap10/
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Census is at 1,497! Syngap.Fund/Census
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Fundraising Season! Gala is tonight in NJ! Syngap.Fund/CLG4 #NLKrox
Ā - UFD Tech, $52,094
Ā - Scramble, $28,000
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Ā Current Efforts:
Ā Ā Ā Ā - Coast2Coast Challenge $42,691 Syngap.Fund/C2CĀ
Ā Ā Ā - Missense Account of the Fund $23,684
https://secure.givelively.org/donate/syngap-research-fund-incorporated/missense-fund
Ā Ā Ā - Charmander $10,585
https://secure.givelively.org/donate/syngap-research-fund-incorporated/running-for-charmander Ā - Emmy $8,173
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ONLINE SHOPPINGS
EBay - We have an eBay shop sell for SRF! https://charity.ebay.com/charity/i/SynGAP-Research-Fund--Inc-/171038Ā
Amazon - https://curesyngap1.org/blog/srf-amazon-storefront-to-cure-syngap1/
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FRAZIER STUDY - Half enrolled!
https://Syngap.Fund/Eye2 khuba@jcu.eduĀ
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CHOP is 1!
Ā - 86 (Visits) + 10 (new scheduled) + 19 (2nd) + 4 (3rd)Ā + 22 (follow up) = DATA
Ā - https://x.com/cureSYNGAP1/status/1843684785740255303Ā Ā
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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.Ā We need to do a webinar with Jackie, Nancy, Elle and others. #NLKrox
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On the site
- Syngap.Fund/Bones & lit review Syngap.Fund/AEDeffect
- Syngap.Fund/Sibling with the inaugural issue from Nancy #NLKroxĀ
- Syngap.Fund/InsWin Insurance with Sara DriscollĀ
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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-InHPĀ
- Cafe SYNGAP1 is up to 20!Ā Syngap.Fund/CafeĀ
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Conference - Conference is 47 days away
- 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
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Industry News - Lundbeck is back into the rare epilepsy space through the acquisition of Longboard for the drug bexicaserin
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
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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 EEGā¦
https://www.cell.com/neuron/fulltext/S0896-6273(24)00645-7
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VOLUNTEERĀ
https://curesyngap1.org/volunteer-with-srf/
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FUNDRAISE
https://syngap.fund/FR - https://curesyngap1.org/srf-fundraising-resources/ now including a webinar from the greats!Ā CFC: #33321 https://curesyngap1.org/srf-cfc-syngap1-combined-federal-campaign/
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SOCIAL MATTERS - AMPLIFY SRF TO MAKE SURE FAMILIES FIND US
Ā - 1,200 YouTube.Ā https://www.youtube.com/@CureSYNGAP1Ā
Ā - 3,818 LinkedIn.Ā 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
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NEWLY DIAGNOSED?
New families have resources here! https://syngap.fund/ResourcesĀ
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Podcasts, give all of these a five star review!
SRF Apple Podcast Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917 Episode 151 of #Syngap10 - Friday, October 18th, 2024
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1
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