¡Nuevo episodio de podcast! Episodio 18: Elcy Florez y Su Hija Camila Desde Washington, USA https://Syngap.Fund/Cafe #SYNGAP1 #CafeSYNGAP1
SynGAP Research Fund (SRF) for SYNGAP1-Related Disorders
Non-profit Organizations
San Diego, CA 3,755 followers
Our mission is to improve the lives SynGAP patients through R&D on treatments, therapies and support systems. #SYNGAP1
About us
SRF is an all volunteer non-profit that seeks to advance research for patients affected by SynGAP1 variations. Our mission is to improve the lives SynGAP patients through R&D on treatments, therapies and support systems. Our mantra: Collaboration. Transparency. Urgency.
- Website
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https://cureSYNGAP1.org
External link for SynGAP Research Fund (SRF) for SYNGAP1-Related Disorders
- Industry
- Non-profit Organizations
- Company size
- 2-10 employees
- Headquarters
- San Diego, CA
- Type
- Nonprofit
- Founded
- 2018
- Specialties
- epilepsy, patient advocacy, autism, podcast, icd-10 codes, genetic epilepsy, rare disease, and genetic epilepsy
Locations
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Primary
2856 Curie Pl
San Diego, CA 92122, US
Employees at SynGAP Research Fund (SRF) for SYNGAP1-Related Disorders
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J. Michael Graglia
SYNGAP1 | Rare Disease Advocate | Founder & CEO @cureSYNGAP1
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Heather Mestemaker
Seasoned industry Commercial leader and Advocate for SYNGAP Rare disease community
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Clement Chow
Finding cures for rare diseases | Associate Professor at University of Utah School of Medicine
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Amy LaChance
Attorney, Government Affairs Professional & Dedicated Public Servant
Updates
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SynGAP Research Fund (SRF) for SYNGAP1-Related Disorders reposted this
The world is lucky to have Marcella Birtele working on neurodevelopmental questions like those found in SYNGAP1-Related Disorders. Her plans for the future are exciting and include more patient-derived cell lines like those donated through SynGAP Research Fund (SRF) for SYNGAP1-Related Disorders COMBINEDBrain Simons Searchlight
Here is my recent interview with @Development, where I talk about my current and future scientific plans as a part of the cohort of postdocs selected for the Pathway to Independence program: https://lnkd.in/gRBauC-8
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Need inspiration for a fundraiser to help SRF finance grants to find a cure for #SYNGAP1? We got you! New webpage with all past events, large or small - https://Syngap.Fund/FR Live webinar 8/29 with expert SRF event hosts - https://lnkd.in/ggHNixQa Help us help our #Warriors!
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Dr. Kimberly Wiltrout has joined our CAB! In addition to seeing patients in the Epilepsy Genetics Program, Dr. Wiltrout is actively involved in clinical research projects with a focus on SYNGAP1-Related Disorders. Thank you, and Welcome! https://Syngap.Fund/CAB #SYNGAP1 Boston Children's Hospital
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Back2School, Unravel Bio, Support Gala & Scramble, Prez Search, Fondo & more great news #S10e148 https://lnkd.in/gws2usdW 📝Full show notes: https://syngap.fund/n148 BACK TO SCHOOL 2024 Push the schools to do better, at every turn. Different than 2023: https://lnkd.in/gbx-Mr5X STUDY https://Syngap.Fund/UB (Unravel Biosciences) 3 forms to fill out, please let us know if you want to participate. PRESIDENT & COO SEARCH https://lnkd.in/g5KzXrD8 RESEARCH UPDATE There are 293 papers on or related to SYNGAP1 since 1998, but 33 of those are in 2024! Tied for 3rd place, but this year will be over 43, I’m certain. https://lnkd.in/g8u33DgF Latest: GOS UK team calls for more OT and ST vs other patients with DD/ID https://lnkd.in/g2JNx5vn PRESS ABOUT FOF (Friends of the Fund) Fondo joins FECOR - https://lnkd.in/guU4sUHX Justin West, MD - https://lnkd.in/d5WFfX-7 Terry Jo Bichell X https://lnkd.in/ggg43_Fe L https://lnkd.in/g9-Z8a6f F https://lnkd.in/gj7jQyQ3 VOLUNTEER NEEDS Thank you Grants, Aaron J Harding, MSc, CLS, MLS(ASCP)SBB & Sara Driscoll, MBA, PE Fundraising and Finance Volunteer! https://lnkd.in/gQPhcAFr https://syngap.fund/FR - https://lnkd.in/gG9iwnCQ Smarts for Syngap - DC Trivia Night - 14 Days - September 4, 2024 Scramble for Syngap - Julie Miles - 45 days! - October 5, Greer, South Carolina https://lnkd.in/ggNHbxgb SynGAP Research Fund Gala - Nancy Kessler - 59 days! - October 18, Farmingdale, NJ https://lnkd.in/ggRHaGUU Missense Account of the Fund $21,684 https://lnkd.in/gnmymb5B Emmy $6,549 https://lnkd.in/gZ--Sjd7 YOU? https://lnkd.in/gA9A9dpZ CALENDAR MANAGEMENT Conference is 106 days away, WE HAVE A ROOM BLOCK & Registration is live! https://lnkd.in/gJRMSyki Episode 148 of #Syngap10 - Wednesday, August 21th, 2024 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1
Back2School, Unravel Bio, Support Gala & Scramble, Prez Search, Fondo & more great news #S10e148
https://www.youtube.com/
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SRF has prepared guidelines to help families tell their #SYNGAP1 stories to the world! https://Syngap.Fund/Media #SpreadAwareness #RareDisease
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New Study! For #SYNGAP1 patients in US/Canada. Help SRF and Unravel Biosciences use their drug library to find a molecule that may help our loved ones! #BetterMedicines #CureSYNGAP1 https://Syngap.Fund/UB
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SRF is a proud member of COMBINEDBrain where we host our IRB-approved BioBank and a huge fan of Terry Jo Bichell.
Excellent write up on Dr. Terry Jo Bichell of COMBINEDBrain, of which SynGAP Research Fund (SRF) for SYNGAP1-Related Disorders is an early member and I have the privilege of sitting on the Exec. Board. TJB is a force, not only has she moved mountains for #Angelman but now via CB she shares he knowledge, vision and network for other NDDs. We cannot say thank you enough for her generous spirit. I have learned so very much. Read up & share: https://lnkd.in/gWXCmj2P #Leadership #RareDisease #Visionary
How a midwife became a neuroscientist to seek a cure for her son
nature.com
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ANNOUNCING - SRF's new board for #Diversity, #Equity, and #Inclusion! SRF is THE community for ALL families living with SYNGAP1-Related Disorders. Details at https://lnkd.in/dYU3Cnn9 #SYNGAP1 #Community
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¡Nuevo episodio de podcast! Episodio 17: Dra. Jisbelys Salazar https://Syngap.Fund/Cafe #SYNGAP1 #CafeSYNGAP1
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