SynGAP10 weekly 10 minute updates on SYNGAP1

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

Keep growing our community, we need each other!

- Correction: Last week, reminder, we are here to clear the path for whomever wins, we don't care who wins we want this race to be won and easier to finish for everyone.

- Big thought: Complex Population, about to get more complex, "Post-Intervention"

- Sign up for Ciitizen: https://www.ciitizen.com/syngap1/ 

- Remember that Duke presentation, here it is: https://www.syngapresearchfund.org/post/combinedbrain-duke-university-team-up-to-receive-a-prestigious-fda-grant/ 

- Next week, lets' get connected Global Genes Conference https://globalgenes.org/event/rare-patient-advocacy-summit/ 

- Simons Searchlight in Spanish, English is still being scheduled: https://syngap.fund/SimonsSearchlight/ 

- Interesting paper on #SYNGAP1 and Sleep, the best part is the suggestion at the end to use this for a clinical endpoint! https://twitter.com/cureSYNGAP1/status/1439825860245090306?s=20 

- Not Alone Coloring Book! https://syngap.fund/notalone 

- Cannonball 11 DAYS . 3 dads driving across the US https://syngap.fund/cball #UFDcure

- Go to the GALA! 29 DAYS! https://syngap.fund/gala 

- Easy to do https://syngap.fund/GNP

- Donate to our current effort for Clinical Trial Readiness https://Syngap.Fund/CTR 

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

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

This was Episode 28 of #Syngap10 - September 24th, 2021

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

Rarebase explained and who is going to win the race, we don‘t care, we just need it fast.

• Rarebase (explained) and also, they helped us find another another family.  Here is the press release: https://www.rarebase.org/post/rarebase-launches-a-neuroscience-drug-discovery-platform-collaborating-with-15-rare-disease-patient-organizations #FUNCTION #RareBase
• Cannonball 18 DAYS did you see this article? https://thealmanac.net/news/upper-st-clair-resident-plans-to-livestream-cross-country-ride-for-charity/article_09570da8-119f-11ec-b1a1-fbe2d9f2526a.html 3 dads driving across :us: and focusing on endurance, can you sponsor? https://www.syngapresearchfund.org/cannonball #UFDcure
• Billy shoes: 10% off with https://Syngap.Fund/Billy watch our interview at https://youtu.be/mAz1PT_JziE 
• Company conversations: Q-State Pipeline
• Reminder, we are here to clear the path for whomever wins, we don't care who wins we want this race to be won.
• Have you bought your tickets to the Gala yet? 35 DAYS! https://www.syngapresearchfund.org/gala 
• San Filippo has a 10 min podcast and we love it.  Honestly, it's been a great way to connect and I urge everyone to try it out. 

This was episode 27 of #Syngap10 - September 17th, 2021

#SYNGAP1 #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAP #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics #epilepsy #autism #geneticcounseling #raredisease #Podcast #SYNGAP10 

The future is coming, let’s build it!

#SYNGAP10 - Episode 26 - September 10th, 2021 - The future is coming, let’s build it!

A wonderful letter from a parent “on an island” that reminded us of the  https://Syngap.fund/lens with http://joashline.com/ made my week.

Digital Lighthouse concept in the 12 Commandments Interview with Effie: https://effieparks.com/podcast/episode-094-mike-and-nasha 

First principles, we are here to change the future and help each other.

The future is coming: Invitae & Ciitizen

• Read this FAQ https://www.ciitizen.com/announcement/ 
• Sign up for Ciitizen https://ciitizen.com/syngap1 

We make the future by raising funds and building community, that is happening twice over with #UFDcure Cannonball & Care Leib Gala.

• https://syngap.fund/cball -> https://www.syngapresearchfund.org/cannonball 25 Days, 
• https://syngap.fund/gala -> https://www.syngapresearchfund.org/gala 43 days (19 for tix)

Two big announcements next week!

Donate to our current effort for Clinical Trial Readiness https://Syngap.Fund/CTR 

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

This was episode 26 of #Syngap10

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

#F78A1 #ICD10 #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics