?? https://lnkd.in/gz2zbGDC to meet Emily, and find out why she and so many others #SupportSRF! "We have made incredible connections and felt massive hope for the future of Hadley and all Syngapians." #SYNGAP1 #SynGAPResearchFund #Volunteers
SynGAP Research Fund (SRF) for SYNGAP1-Related Disorders
非盈利组织
San Diego,CA 3,853 位关注者
Our mission is to improve the lives SynGAP patients through R&D on treatments, therapies and support systems. #SYNGAP1
关于我们
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.
- 网站
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https://cureSYNGAP1.org
SynGAP Research Fund (SRF) for SYNGAP1-Related Disorders的外部链接
- 所属行业
- 非盈利组织
- 规模
- 2-10 人
- 总部
- San Diego,CA
- 类型
- 非营利机构
- 创立
- 2018
- 领域
- epilepsy、patient advocacy、autism、podcast、icd-10 codes、genetic epilepsy、rare disease和genetic epilepsy
地点
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主要
2856 Curie Pl
US,CA,San Diego,92122
SynGAP Research Fund (SRF) for SYNGAP1-Related Disorders员工
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J. Michael Graglia
SYNGAP1 | Rare Disease Advocate | Founder & CEO @cureSYNGAP1
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Heather Mestemaker
Driven to help patients with rare and neurological conditions: Executive commercial lead in biopharmaceuticals and advocate for SYNGAP1 (rare disease)
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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
动态
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?Nuevo episodio de podcast! Episodio 22: Sara Jimenez y Su Hijo Diego, El Primer Paciente de SYNGAP1 Diagnosticado en Guatemala https://Syngap.Fund/Café #SYNGAP1 #CaféSYNGAP1 #CureSYNGAP1
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We are #Thankful to all the donors to SRF's #Coast2Coast Clinics Challenge to help us #CureSYNGAP1! If you haven't already, it's not to late to join a Squad! Details - https://Syngap.Fund/C2C Donate $1k+ and receive a complimentary 30 oz insulated tumbler! #C2C #SYNGAP1Clinic #GivingTuesday
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#SYNGAP1Stories is back! Just in time for the 2024 #SYNGAP1 Conference, new co-host Rainy Schlosser talks with Conference Director Stacey. "I can't just accept 'this is the way it is and there's nothing you can do about it'. Volunteering makes me feel less alone." https://lnkd.in/g9Kg9nrg #SYNGAP1StoriesJack #Epilepsy ?? #Autism ?? #IntellectualDisability ?? #RareDisease #Advocacy #SyngapConf
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Cure SYNGAP1 is firing on all cylinders!? 4MTx, C2C and the Conference is almost here!? #S10e154 https://lnkd.in/gQRhVUm3 Friday, November 15, 2024 SRF NEWS Busy week for Mike & Virginie: Citizen Health & Ultragenyx, not Milken. Sign up for Citizen Health https://lnkd.in/g9ee6d6A Growing our name https://lnkd.in/gxiq_mMn Financials updated with 2023 https://lnkd.in/gt55uwgy Thank you Stefanie Decker! Newsletter #41 - https://Syngap.Fund/NL41 - About why we need a cure - quotes from our families We're over 100 volunteer bios on the website! More being added every week! Great work Zoe! https://lnkd.in/gBeGJPrS Cafe SYNGAP1 e24 is up! Gloria Amparo Guzmán Cali, Colombia https://syngap.fund/Cafe 4MTx Announcement and direct impact on pipeline https://lnkd.in/gGrXrcpy https://lnkd.in/g3GPgSVE Speaking of small molecules, get this on Ravicti https://lnkd.in/gTm3yMUW RESEARCH UPDATE There are 306 papers on or related to SYNGAP1 since 1998, but 48 of those are in 2024! https://lnkd.in/g8u33DgF Latest is from Frazier! https://lnkd.in/gFh2TNHX Sign up for Frazier https://syngap.fund/eye2? https://lnkd.in/gtXZDVbZ More Grants at work Science: Key Missense Webinar next week https://lnkd.in/gzeDWJ25 New study at CHOP - Phenotype of the Hispanic SYNGAP1 Family. Details (English or Spanish) at https://lnkd.in/gk9RM_h2 Bower family blog - Camden's trip to CHCO - https://lnkd.in/emMkhQyA Thank you Corey Baysden for getting the Studies so well organized!? https://lnkd.in/gq64vkpT Conference - Conference is 18 days away! Lineup: Science Day lineup - https://lnkd.in/g_tXeEvh Agendas are up! https://lnkd.in/gJRMSyki Thursday Reception at the Hotel: https://lnkd.in/gvsHN3XT Friday Join us for dinner! https://lnkd.in/gn_hCqMs ... VOLUNTEER SPOTLIGHT: Amber Mickler https://lnkd.in/gBnTTgGC? ... Episode 154 of #Syngap10? #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1
Cure SYNGAP1 is firing on all cylinders! 4MTx, C2C and the Conference is almost here! #S10e154
https://www.youtube.com/
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Whose stocking do you need to stuff? Give the perfect gift to help spread awareness among your family and friends. Today is the day - order without delay! https://lnkd.in/gnz4FnWG #SYNGAP1 #SYNGAP1Ornament
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"With a cure, we would love to see him grow into a small business owner and possibly someday live on his own!" Read more about the struggles our families experience living with #SYNGAP1 at https://Syngap.Fund/Cure Be sure to join us at the SYNGAP1 Conference in LA - info at https://Syngap.Fund/LA #WeNeedACure #RareDisease #SYNGAP1RelatedDisorders
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Excited to see where this goes. 4M Therapeutics Inc. is a company that is moving mountains and we are thrilled to partner with them for #SYNGAP1 patients.
We are delighted to announce this grant award! The SynGAP Resarch Fund is a great organization, and we appreciate the opportunity. Our work continues to advance.
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Register to join SRF virtually and hear from Scientists and Researchers working to #CureSYNGAP1! Details and agendas at https://Syngap.Fund/LA! #SYNGAP1 #SyngapConf #SyngapConf24
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All English-speaking households living with #SYNGAP1 should sign up for this study today! This is different from the first eye tracker study! Help us help our loved ones - details at https://Syngap.Fund/Eye2 Thank you Dr. Tom Frazier, Katie Huba, MS, BCBA, COBA, LBS, and John Carroll University! #BetterMedicines #CureSYNGAP1