SynGAP10 weekly 10 minute updates on SYNGAP1

Let’s make sure SYNGAP1 is cured in our lifetime. It’s up to us.

Let’s make sure SYNGAP1 is cured in our lifetime.  It’s up to us.
Episode 38 of #Syngap10 - December 4th, 2021  

Roundtable 3 #SRFRT3 was a great success, special thanks to all speakers.

The #FAST #Angleman meeting is incredible. https://cureangelman.org/events/gala2021 

Sign up for #Ciitizen. https://Ciitizen.com/SYNGAP1 

 

Raise funds for SYNGAP1

- Facebook Fundraisers: http://syngap.fund/FBFun

- Giving Tuesday Fundraiser: https://syngap.fund/gt21

 

- What is SYNGAP1?  https://www.syngapresearchfund.org/home/what-is-syngap1

- Sign up for this 10 minute #podcast #SYNGAP10 here https://syngap.fund/10

 

#F78A1 #FAST #Angelman #SRFRT3 #SyngapaseRT #Syngap1 #syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics

Support SRF this GivingTuesday! With guest host, Caitlin Kaspar, Syngap sibling, nonprofit professional

Support SRF this GivingTuesday! With guest host, Caitlin Kaspar, Syngap sibling, nonprofit professional

- Getting diagnosed with Syngap1 as an adult 

- It’s a fact; nonprofits have overhead 

   - SRF founders cover all overhead! www.syngapresearchfund.org/post/7-reasons-smartdonors-fight-syngap1-via-srf 

   - SRF is all about transparency syngap.fund/finance

   - SRF has 600K out in grants in 2021 syngap.fund/grants 

- End of Year Giving

- Shop and donate at Amazon Smile bit.ly/SRF_Smile 

- GivingTuesday Nov 30 syngap.fund/gt21

- End of year giving letter created for families to share syngap.fund/eoy

 

Episode 37 - November 26th, 2021
https://www.syngapresearchfund.org/syngap10-podcast

#overhead #ciitizen #givingtuesday #adultswithdisabilities #leadership #GlobalGenes #minted #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics 

Grateful for the incredible SRF team/family...

Top 5:

• 10 to go! https://syngap.fund/NHS or https://www.ciitizen.com/syngap1/
• https://syngap.fund/gt21
• https://syngap.fund/rt3
• Studies:
• ORCA - Full
• FRAZIER - email Corey@syngapresearchfund.org
• SIGN UP ALL ONLINE https://syngap.fund/adults and email Lauren@syngapresearchfund.org

Old Guard:

• Aaron, Olga, Rebecca,
• Virginie, Hans https://www.syngapresearchfund.org/post/meet-the-globalvillage-of-syngapleaders by Jo!
• Marta, Vicky, Peter, Kali, Summer
• Pavel, Nancy, Sydney
• Tavillas
• Lauren Perry

New wave of leaders:

• Alexis https://syngap.fund/naya
• Corey Baysden
• Jen & Dan Robert
• Suzanne Jones
• Caitlin Kasper
• Ashley Frye

GET YOUR CARDS! Minted.com FUNDRAISESYNGAP

Episode 36 - November 19th, 2021
https://www.syngapresearchfund.org/syngap10-podcast

#grateful #studies #ciitizen #givingtuesday #SynapseRT #adultswithdisabilities #leadership #careaboutrare #GlobalGenes #minted #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics

Our kids will live long lives and do beautiful things, let’s make sure we help them as much as possible.

Episode 35 of #Syngap10 - November 12th, 2021  

HOLIDAY GIFTS - GET SRF #MERCH

5 days left to order Hoodies, T-shirts, other gear: 

- https://syngap.fund/LHC or https://syngap.fund/BKC
- Get your holiday cards at Minted.com and use code FUNDRAISESYNGAP 

 

FOUR STUDIES are enrolling now/soon:

- Dr. Andrade - Watch the video and let us know if you have an adult who would like to participate. https://youtu.be/WyhRDePe0Jc 

- Dr. Frazier - Reach out to info@syngapresearchfund.org to participate.  Here is the webinar. https://www.syngapresearchfund.org/webinars/improving-the-assessment-of-syngap1-by-creating-online-measures-for-parents-and-patients 

- ORCA - Once we get the greenlight from FDA we will start recruiting.  Here is a link with more info: https://www.syngapresearchfund.org/post/combinedbrain-duke-university-team-up-to-receive-a-prestigious-fda-grant 

- We have less than 20 spots left in this cohort of Ciitizen, sign up in the next 10 days: https://Ciitizen.com/SYNGAP1 

 

CRYPTO

- Jack Shi interview on 

https://twitter.com/cureSYNGAP1/status/1459165110862168066?s=20

https://www.linkedin.com/feed/update/urn:li:activity:6864944054384279552

https://www.facebook.com/cureSYNGAP1/posts/910882546460875

- Donate Crypto to SRF  https://syngap.fund/block

 

HELP US RAISE FUNDS FOR SYNGAP

- Facebook Fundraisers: http://syngap.fund/FBFun

- Giving Tuesday Fundraiser: https://syngap.fund/gt21

 

- What is SYNGAP1?  https://www.syngapresearchfund.org/home/what-is-syngap1

- Sign up for this 10 minute #podcast #SYNGAP10 here https://syngap.fund/10

 

#NFTs #crypto #unlockdefi #Bonfire #minted #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics

Multiple studies enrolling now, start with Ciitizen and keep going...

Episode 34 of #Syngap10 - November 5th, 2021  

 

- 3rd Annual Synapse Roundtable will be Dec 3, 2021, sign up at https://syngap.fund/rt3

- We have 22 spots left in this cohort of Ciitizen, sign up in the next 10 days: https://Ciitizen.com/SYNGAP1 

-Three more studies are enrolling now/soon:

   -Dr. Andrade - Watch the video and let us know if you have an adult who would like to participate. https://youtu.be/WyhRDePe0Jc 

- Dr. Frazier - Reach out to info@syngapresearchfund.org to participate.  Here is the webinar. https://www.syngapresearchfund.org/webinars/improving-the-assessment-of-syngap1-by-creating-online-measures-for-parents-and-patients 

- ORCA - Once we get the greenlight from FDA we will start recruiting.  Here is a link with more info: https://www.syngapresearchfund.org/post/combinedbrain-duke-university-team-up-to-receive-a-prestigious-fda-grant 

- Great newsletter, make sure to read it: https://syngap.fund/Nov

- Giving Tuesday Fundraiser: https://syngap.fund/gt21

- ICD-10 Code: https://syngap.fund/F78A1 ICD11 Effort: https://syngap.fund/ICD11

- What is SYNGAP1?  https://www.syngapresearchfund.org/home/what-is-syngap1
- Sign up for this 10 minute #podcast #SYNGAP10 here https://syngap.fund/10

- Happy GC Awareness Day!

 

#SynapseRT #F78A1 #ICD10 #ICD11  #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics

Gather and connect. Learn from those who have come before. Keep hope alive!

Episode 33 of #Syngap10 - October 29th, 2021  

-Caren Leib Gala was an epic success - #SRFGala - syngap.fund/gala 

-Partnering with Dr. Danielle Andrade in Toronto who is including SYNGAP1 in gene study and is looking for at least 30 families with adult Syngapians. It’s a huge opportunity. https://www.uhnresearch.ca/researcher/danielle-andrade 

- Be hopeful- there is a lot of progress happening below the surface and we have more coming! syngap.fund/grants 

- Support SRF - syngap.fund/give 

- What is SYNGAP1?  https://www.syngapresearchfund.org/home/what-is-syngap1 

- Sign up for this 10 minute #podcast #SYNGAP10 here https://syngap.fund/10 

 

#F78A1 #ICD10  #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics #SRFGala

Gala. Webinar. Crypto SunBlocks. ICD 10 AND 11. Thank you. Sign up for Ciitizen by 11/15/21.

Happenings

Tomorrow is the GALA https://syngap.fund/gala 

In two Thursdays! Investigating the functional single cell biology of SYNGAP1 pathways Thursday, November 4th Register: http://Syngap.Fund/mc 

NOW (Crypto Art Auction) https://syngap.fund/sungap 

 

ICDs & Medical Care
- Corey ICD-10 issue https://syngap.fund/F78A1
- ICD-11 is happening too!  Not kidding: https://www.syngapresearchfund.org/post/icd-11-is-coming-soon-and-we-need-your-help
- Medical Considerations Guide is up! www.syngapresearchfund.org/families/doctors 

Thank yous

- Thank you to Ashley and Forbes for giving SRF some air time! 

https://www.forbes.com/sites/kevindowd/2021/10/20/after-helping-pfizer-speed-up-its-vaccine-trials-saama-strikes-a-430-million-deal-with-carlyle/ 

- Thank you to Ira for the opportunity, longer interview today on Potential, Progress, Possibilities, on https://syngap.fund/mike  or directly at https://youtu.be/RGnStUPmUkI 

- Spectrum for featuring two SRF Grantees work. https://www.spectrumnews.org/news/autism-linked-gene-syngap1-molds-synaptic-plasticity-learning/

- Thank you to Jansen’s parents for going big on this fundraiser:
https://syngap.fund/Jansen $90k+

Data Deadlines
- Sign up for #Ciitizen, we have until November 15 to be in the next release: https://www.ciitizen.com/syngap1 

- December 3rd is the third annual SYNAPSE Roundtable #SynapseRT https://www.Syngap.fund/RT3 

 

etc.

- What is SYNGAP1?  https://www.syngapresearchfund.org/home/what-is-syngap1 

- Sign up for this 10 minute #podcast #SYNGAP10 here https://syngap.fund/10 

#F78A1 #ICD10 #ICD11 #Syngap1 #SYNGAP #SUNGAP #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics

Episode 32.

Coming in hot! BCH Grant putting Ciitizen to work & the Gala is next week!

Episode 31 of #Syngap10 - October 15th, 2021

- We just gave BCH a large grant to work on #SYNGAP1 #ciitizen data, thanks to all our donors, press release: https://www.syngapresearchfund.org/post/syngap-research-fund-announces-308-000-multidisciplinary-biomarker-grant-to-boston-childrens-hospital
- Sign up for Ciitizen, we have until November 15 to be in the next release: https://www.ciitizen.com/syngap1 

- Huge thanks to UFDtech for the #UFDcure Cannonball, $151k! https://www.justgiving.com/fundraising/ufdcure 

- Consider donating to our fundraiser for RareBase syngap.fund/RB. 

- Oct. 23rd is the gala & auction in NJ. Dr. Ben Prosser, SRF Director Nancy Kessler and co-founder Ashley Evans will be speaking. syngap.fund/gala

- December 3rd is the third annual SYNAPSE Roundtable #SynapseRT https://www.Syngap.fund/RT3 

- What is SYNGAP1?  https://www.syngapresearchfund.org/home/what-is-syngap1 

- Sign up for this 10 minute #podcast #SYNGAP10 here syngap.fund/10

#F78A1 #ICD10 #UFDcure #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics

Inspiring your community and raising awareness for SYNGAP1

- Cannonball’s last day TODAY. Three dads driving across the US. syngap.fund/cb

- Family fundraiser: syngap.fund/jansen

- Consider donating to our fundraiser for RareBase. syngap.fund/rb

- SYNGAP1 Patient Voice Publication. syngap.fund/pvp

#F78A1 #ICD10 #UFDcure #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics

F78.A1 is the ICD-10 code for 883 SynGAPians today! #UFDcure Cannonball in 5 days! Guest host, Ashley Frye

- Go see the SRF TikTok account: syngap.fund/tiktok. 

- Find us everywhere at our handle @curesyngap1.

- It's October 1! #SYNGAP1 ICD-10 code F78.A1 is live TODAY. Ask all your clinicians to start using it. syngap.fund/F78A1 

- Cannonball 5 DAYS . 3 dads driving across the US syngap.fund/cball #UFDcure.

- Consider donating to our fundraiser for RareBase syngap.fund/RB. 

- #SYNGAP Census! There are 883 diagnosed Syngapians worldwide. This is +75 in the last 3 months. Learn more at syngap.fund/census.

- Medical Considerations Guide is up! www.syngapresearchfund.org/families/doctors.  

- Oct. 23rd is the gala & auction in NJ. Dr. Ben Prosser and co-founder Ashley Evans will be speaking. syngap.fund/gala

- October Newsletter: read it here: syngapresearchfund.org/news.  

- Sign up for this 10 minute #podcast #SYNGAP10 here syngap.fund/10

This was Episode 29 of #Syngap10 - October 1st, 2021

#F78A1 #ICD10 #UFDcure #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics