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Over 1200 families are caring for a loved one with the rare disease ”SynGAP” resulting from a variant of the SYNGAP1 gene. This 10 minute weekly podcast is for them. A quick summary of the latest news in the space. The host is Mike Graglia, co-founder & managing director of the SynGAP Research Fund. SRF is a parent-led, all volunteer public charity in the US that strives to accelerate research into treatments for SYNGAP1 so that we can help our loved ones in a timeframe that matters. Learn more at https://www.syngapresearchfund.org/
Episodes
Thursday Jul 11, 2024
Thursday Jul 11, 2024
📝Full show notes: https://syngap.fund/n145
2020 COBA GRANT
SYNGAP.FUND/IPSC > https://curesyngap1.org/ips-cell-models/
2022 QUADRATO GRANT & 2022/3 PAPER
MAY 22 PRE-PRINT: https://www.biorxiv.org/content/10.1101/2022.05.10.491244v1.full
SRF PR: https://www.eurekalert.org/news-releases/1050685
2022 ANDERSON GRANT & 2024 PAPER
Announcement: https://www.linkedin.com/posts/curesyngap1_syngap1-srfresearch-stemcelltherapy-activity-7215557722614743041-rxOV
Angelman: https://pubmed.ncbi.nlm.nih.gov/33856035/
Transformatx Biotheraputics LLC:
https://cureangelman.org/fast-announces-formation-of-lentiviral-gene-therapy-company
TAKEAWAY: Focus on the clinic, and let the best therapy win.
CLINICAL NETWORK / NHS UPDATE
COLORADO webinar postponed, still register, we will notify you via email of the new date. https://syngap.fund/Abbott
To sign up for the Colorado clinic please contact SRF Ops Manager, Lauren Perry, Lauren@curesyngap1.org.
CALIFORNIA SYNAPTOPATHY CLINIC (CSC) starting to see patients, if you are in CA call them.
https://curesyngap1.org/blog/srf-announces-stanford-launches-california-synaptopathy-clinic/
FUNDRAISING
Missense Account of the Fund $10k+
https://secure.givelively.org/donate/syngap-research-fund-incorporated/missense-fund
Emmy $5k+
YOU?
https://curesyngap1.org/blog/fundraising-the-backbone-of-research/
CALENDAR MANAGEMENT
Rare Across America is 24 days away, registration ends in 10 days!
https://everylifefoundation.org/rare-advocates/rare-across-america/
Conference is 146 days away & Registration is live!
https://curesyngap1.org/events/conferences/syngap1-conference-2024/
CB Blood Donation accelerates Science!
STXBP1 conference (Philadelphia, PA, July 19-21, 2024)
Myhre Syndrome conference (Philadelphia, PA, July 27-28, 2024)
HNRNPH2 conference (Seattle, WA, July 29-30, 2024)
PWS/USP7 conference (Atlanta, GA, September 26-27, 2024)
COMBINEDBrain conference (Kansas City, MO, September 29th, 2024)
SYNGAP1, SLC6A1, Cure GABA-A Variants conference (Los Angeles, CA, December 4-5, 2024)
NEWLY DIAGNOSED?
New families have resources here! https://syngap.fund/Resources
SOCIAL MATTERS - AMPLIFY SRF TO MAKE SURE FAMILIES FIND US
- 1,050 YouTube. https://www.youtube.com/@CureSYNGAP1
- 3,685 LinkedIn. https://www.linkedin.com/company/curesyngap1/
- 10,724 Twitter https://twitter.com/cureSYNGAP1
- 48k Insta https://www.instagram.com/curesyngap1/
- 415 TikTok https://www.tiktok.com/@curesyngap1
Podcasts, give all of these a five star review!
SRF Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917
Episode 145 of #Syngap10 - July 11, 2024
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1
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