CURE SYNGAP1 PODCAST aka SYNGAP10

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 202...

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-syngapl...

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:/...

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...

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 b...

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.o...

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/s...

- 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 #SynGAPResear...

- 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...

- 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/c...

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-ri...

#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...

-That incredible webinar https://Syngap.fund/ana was a source of hope! -The newsletter came out yesterday; it’s really good: https://syngap.fund/sept   -Families in the US, UK, Canada & Australia are reminded to sign up for the largest collection of SYNGAP1 data on earth for free: https://ciitizen.com/syngap1   -Donate to our current effort for Clinical Trial Readiness https://Syngap. Fund/CTR   -...

#SYNGAP10 - Ep. 24 - August 27th, 2021 - Two conversations with the same conclusion... Next Webinar: https://Syngap.fund/ana   Sept 2 at 10 am. PST Two conversations with the same conclusion, sign up for Ciitizen https://ciitizen.com/syngap1   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...

Episode 23 of #Syngap10 - August 10th, 2021 Eduardo webinar was amazing, it's on FB Live and we will have the YouTube up soon.  Remember to register for Ana in September  https://Syngap. Fund/Ana SYNGAP1 is on the Compassionate Access List (CAL) for the SSA.  This just happened and it's due to the work of one of our families, thank you!  https://Syngap. Fund/SSA   Great scientist conversations thi...

Episode 22 of #Syngap10 - August 13th, 2021 - Webinars      - https://Syngap.fund/eduardo   August 19 at 10 am PST      - https://Syngap.fund/ana   Sept 2 at 10 am PST - Mugs mugs mugs      - https://twitter.com/AAledo/status/1426207246149636099   - Blog: Genetics article is a must read for new families       - https://www.syngapresearchfund.org/post/what-should-i-ask-in-my-genetics-appointment-fo...

#SYNGAP10 - Episode 21 - August 2, 2021 - Connection is everything! -Thank you for all the connections this week!    -San Diego with the Harding Family         - https://www.facebook.com/groups/SyngapResearchFund/posts/810210336527359      -New Jersey with Nancy Lieb Kessler         - https://www.thesandpaper.net/articles/genetic-testing-solves-a-familys-medical-mystery/    -Ashley in Boston      ...

#SYNGAP10 - Episode 20 - July 23, 2021 - Great things afoot!  Join us. Thank you to you know who you are, & welcome to three new families this week! https://syngap.fund/CTR  is happening, worked on data this week https://ciitizen.com/SYNGAP1  sign up, we are filling cohort 3! Next grant on drug discovery is already in the works A few announcements Wed July 28 - San Diego, see you next week Sunday...

-Working with Duke on the ORCA, let us know about your SYNGAPian here https://syngap.fund/comms -Ciitizen, we are in the 3rd cohort, sign up quick: https://ciitizen.com/SYNGAP1 -Still fundraising for https://syngap.fund/ctr -All social media is now on @cureSYNGAP1    -https://Facebook.com/cureSYNGAP1    -https://Twitter.com/cureSYNGAP1    -https://Linkedin.com/company/curesyngap1    -https://Insta...

#SYNGAP10 - Ep. 18 - "Seizures, Communication, Behavior, Sleep, Other" Is that right? https://Syngap. Fund/CTR  - $26k and growing. Birthday Fundraisers, $25 per $250, we will find and thank you! https://Syngap. Fund/blog  - Make sure to read the latest on variants Events: Webinar & Meetups https://syngap.fund/webinar - Next week, Saturday, July 17th @ 9 Pacific. San Diego Family Meetup - SRF Syng...

#SYNGAP10 - Episode 17 - 2 July 2021  - Thanks for listening, now please share! - Newsletter: https://Syngap. Fund/July - Census: https://Syngap. Fund/Census Honestly, it’s low.  Remember Covid. - Frazier: 7/17 9 AM https://www.syngapresearchfund.org/webinars/improving-the-assessment-of-syngap1-by-creating-online-measures-for-parents-and-patients - Palma: 8/19 10 AM https://www.syngapresearchfund....

#SYNGAP10 - Episode 16 - 25 June 2021 REMINDER - Put your own mask on first. THANKS - #syngapLOVE photos were great, check out our header image THANKS - DISORDER Channel - Thank you for Dad’s mention. https://www.facebook.com/rarediseasefilmfestival/videos/924558798278718 GIVE - https://Syngap. Fund/CTR - We need to raise some money folks! WORK - Fundraisers are getting real, need to organize some...

#SPLASH4SYNGAP is on MONDAY. 3 days until June 21st! Take photos with the flyer https://syngap.fund/love = https://www.syngapresearchfund.org/post/share-your-love-for-someone-with-syngap1-for-splash4syngap   Use hashtag #SYNGAPlove & #Splash4SYNGAP DSC & BCH - It’s go time!  Let’s raise some funds. Read the blogs Syngap.fund/biomarker =  https://www.syngapresearchfund.org/post/srf-grant-to-boston-...

- We are seeing some great photos! https://Syngap.fund/Love  which is  https://www.syngapresearchfund.org/post/share-your-love-for-someone-with-syngap1-for-splash4syngap   #SyngapLove COMMUNITY  - I don’t want the questions. It’s hard to go out in public, our kids are so damn cute. - Connecting on a gene/geno pheno.  https://www.syngapresearchfund.org/post/understanding-your-genetic-report-with-sy...

SYNGAP10 - Ep. 6 - 16 April 2021 SRF Newsletter yesterday, make sure you sign up! SSB is off and running. Webinars , another tomorrow in Spanish Sprint next Saturday - April 24th Celebrating Caren is now live and about to go on the circuit thanks Nancy, Daniel & illumina SSB - Seizure sleep and behavior Do the surveys!  Links are in the newsletter and here:  syngap.fund/ssb-Behavior syngap.fund/ss...