Friday, January 16, 2026 - Week 3

Stoke Phase 3 Rapid Recruitment - A timeline that is ours to beat!

If Marcin can make it from Poland, you can make it from where you are!

CAMP4 Website is great and features Dani Williams!

Newsletter is out!

Sara Driscoll Genetic Testing Story - Share it or copy it!

Pubmed 2026 is at 3!

SOCIAL MATTERS

$CAMP stock is at $5.78 on 15 Jan. ‘26

Like and subscribe to this podcast wherever you listen.

Saturday, January 10, 2026 - Week 2

Here are key talking points to reference when talking about SRD.   Please let us know your thoughts about how these could be better. https://docs.google.com/document/d/1lXaDQEVwF1K_yAU-RicaJibxb8xoJtldSvnVgopwu00/edit?usp=sharing 

SOCIAL MATTERS

4,546 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ 

1,500 YouTube.  https://www.youtube.com/@CureSYNGAP1   

11.2k Twitter https://twitter.com/cureSYNGAP1 

45k Insta https://www.instagram.com/curesyngap1/ 

$CAMP stock is at $6.20 on 8 Jan. ‘26 https://www.google.com/finance/beta/quote/CAMP:NASDAQ

Like and subscribe to this podcast wherever you listen.  https://curesyngap1.org/podcasts/syngap10/

Episode 195 of #Syngap10 #CureSYNGAP1 #Podcast

Friday, January 9, 2026 - Week 2

Big news in SYNGAP-land, Becky Quick and Matt Quayle have a beautiful SynGAPian named Kaylie & they are launching CNBC Cures!

- Wonderful to have more awareness of SYNGAP1, I hope it leads to more diagnoses.

- My two favorite quotes from the episode and podcast: “There is no Mission without Money”-BQ & “She has reset our whole life plan…one day I’m going to be gone and is Kaylie going to be ok?”-MQ

- Here is our page with all the links! https://www.linkedin.com/posts/curesyngap1_syngap1-curesyngap1-cnbccures-activity-7415094066675216387-32wF

It's important for us all to remember that it can take time to find our voice. And then use it.

Speaking of using our voice, what can you say? We worked yesterday on Key Talking points which will live here and I will talk about them in the next episode.  https://docs.google.com/document/d/1lXaDQEVwF1K_yAU-RicaJibxb8xoJtldSvnVgopwu00/edit?usp=sharing

First paper of 2026, Challenges of Caregiving in SYNGAP1, STXBP1, and TSC.

https://pubmed.ncbi.nlm.nih.gov/41405416/

PUBMED is at 1 for the year. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2026&timeline=expanded&sort=date

SOCIAL MATTERS

4,546 LinkedIn.  https://www.linkedin.com/company/curesyngap1/

1,500 YouTube.  https://www.youtube.com/@CureSYNGAP1

11.2k Twitter https://twitter.com/cureSYNGAP1

45k Insta https://www.instagram.com/curesyngap1/

$CAMP stock is at $6.20 on 8 Jan. ‘26 https://www.google.com/finance/beta/quote/CAMP:NASDAQ

Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10/

Episode 194 of #Syngap10 #CureSYNGAP1 #Podcast

Friday, January 2, 2026 - Week 1

#SynGAPCensus = 1,707 https://curesyngap1.org/blog/syngap1-census-2025-update-32-q4-2025-1707/

From the Cantor Report on CAMP4 

The Stockdale Paradox. The best way to succinctly describe CAMP4 and the parties driving progress in this field (Cure SYNGAP1, families, researchers) is, for anyone familiar with Jim Collins' book "Good to Great," they have fully embraced the "Stockdale Paradox": To succeed in difficult circumstances you must 1) confront the brutal facts (severity of the disorder, devastating

impact on patients and families, lack of treatment) while 2) maintaining unwavering faith that you can and will prevail in the end. It gives us conviction that there WILL be a therapy approved for SYNGAP sooner than later and CAMP is most likely to deliver it.

Read more on Jim Collins site:

https://www.jimcollins.com/concepts/Stockdale-Concept.html

This is exactly what SYNGAP1 Argentina achieved at our conference.  Acting with certainty that they can and will prevail.

Check out their exceptional flyer: https://drive.google.com/file/d/1O_DldABKTkB9ZLIiUBqXGBMrtlzie-7i/view?usp=share_link 

PUBMED is at 59 for the year, that is +4 over our best year, last year.  177 since 2022, almost half of our SYNGAP1 Knowledge (366) has been created in the past 4 years!

https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2026&timeline=expanded&sort=date 

#20Posters Speaking of publications, I talked about 16 posters at AES this year and shared on LI, but I was wrong in the responses I realized we are up to 20! https://www.linkedin.com/posts/graglia_syngap1-curesyngap1-activity-7408291479187755008-rMru 

Mutation Tattoo Story

https://www.linkedin.com/posts/shriya-bhat-0b845b203_at-a-patient-advocacy-meeting-in-nashville-activity-7409304451821277184-TO0t 

SOCIAL MATTERS

4,529 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ 

1,500 YouTube.  https://www.youtube.com/@CureSYNGAP1   

11.2k Twitter https://twitter.com/cureSYNGAP1 

45k Insta https://www.instagram.com/curesyngap1/ 

$CAMP stock is at $6.00 on 2 Jan. ‘26 https://www.google.com/finance/beta/quote/CAMP:NASDAQ

Like and subscribe to this podcast wherever you listen.  https://curesyngap1.org/podcasts/syngap10/

Episode 193 of #Syngap10 #CureSYNGAP1 #Podcast

Saturday, December 20, 2025 - Five days till Christmas, 11 days left to raise funds to CURE SYNGAP1

AES was exceptional in many ways, here are a few:

Aaron's post on growth! https://www.facebook.com/aaron.j.harding.5/posts/pfbid0231DtMVUtkZa4eXLv8C8qbf4xEN95aRP1xJ8sGNNvun7aDuUyZVatMWUjjigdXfg1l 

Pre-register now for Denver: cureSYNGAP1.org/Pre26

Fundraising. We are YTD $1.68M which is below $1.86M in ’23 and $1.97M in ’24.  We need to really double down on fundraising for the next two weeks and into next year.  Support our campaign at curesyngap1.org/unlock

ACTION ALERT 🚨Call Bernie and urge him to help children at NO COST to the USG by supporting the PRV. (202) 224-5141

https://www.linkedin.com/posts/christine-waggoner-71b1555_mibagents-makeitbetter-osteosarcoma-activity-7408186315592085504-A6AY 

PUBMED is at 58 for the year, that is +4 over our best year, last year.  187 since 2022, more than half of our SYNGAP1 Knowledge (365) has been created in the past 4 years!

https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2026&timeline=expanded&sort=date 

SOCIAL MATTERS

4,519 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ 

1,490 YouTube.  https://www.youtube.com/@CureSYNGAP1   

11.2k Twitter https://twitter.com/cureSYNGAP1 

45k Insta https://www.instagram.com/curesyngap1/ 

$CAMP stock is at $6.38 on 19 Dec. ‘25 https://www.google.com/finance/beta/quote/CAMP:NASDAQ

Like and subscribe to this podcast wherever you listen.  https://curesyngap1.org/podcasts/syngap10/

Episode 192 of #Syngap10 #CureSYNGAP1 #Podcast

#CyberMonday, December 1, 2025. Week 49.

Go buy The Monster Inside My Brother by Nicole Ciccone illustrated by Lena Bardy.

Bookshop: https://bookshop.org/p/books/the-monster-inside-my-brother-nicole-ciccone/8986b9c64d1ebe5d?ean=9798999980700&next=t&

Barnes and Noble: https://www.barnesandnoble.com/w/the-monster-inside-my-brother-nicole-m-ciccone/1148368158 

Amazon: ​​https://a.co/d/imfxmwG 

See you Thursday at the CURE SYNGAP1 Conference 2025 Atlanta: https://curesyngap1.org/events/conferences/cure-syngap1-conference-2025-hosted-by-srf/

SOCIAL MATTERS

4,474 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ 

1,480 YouTube.  https://www.youtube.com/@CureSYNGAP1   

11.2k Twitter https://twitter.com/cureSYNGAP1 

45k Insta https://www.instagram.com/curesyngap1/ 

$CAMP stock is at $3.80 on 26 Nov. ‘25 https://www.google.com/finance/beta/quote/CAMP:NASDAQ

Episode 191 of #Syngap10 #CureSYNGAP1

Happy Thanksgiving… Thursday, November 27, 2025. Week 48.

Continued from #S10e189…

And the AAV Paper (https://pubmed.ncbi.nlm.nih.gov/40988338/) from #S10e187… https://curesyngap1.org/podcasts/syngap10/clinical-research-ai-dx-nl47-survey-autism-press-6-days-to-register-for-syngap1conf-s10e187/

https://curesyngap1.org/blog/

Issac’s story, Transmitter reprint, Scramble 4 write up and JK on #Autism, #MustRead

https://curesyngap1.org/resources/webinars/ 119 - 112

Register for livestream of the conference, AAV from Allen Inst., dos en espanol, Missense, Unlock and Rare-X for ProMMiS.

https://curesyngap1.org/podcasts/syngap1-stories/ 

A gold mine have you listened to #38, the Virginie Pod, really must listen, she is our leader. https://www.linkedin.com/posts/graglia_syngap1stories-syngap1-syngap1storiesty-activity-7387203351907708928-liNL 

CLINICAL TRIAL & GENETIC MEDICINE CORNER

Example of Ultragenyx FAST Angelman follow on trial to look at other ages and genotypes, key message, never give up. https://www.linkedin.com/posts/cureangelman_the-global-aurora-study-will-enroll-approximately-activity-7389647402690957312-Bihi

https://www.linkedin.com/posts/graglia_sma-fdaapproval-rarediseaseinnovation-activity-7398939783005347840-Ocd_ Remember Spinraza was approved in December 2019.

TODOS

SOCIAL MATTERS

4,468 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ 

1,480 YouTube.  https://www.youtube.com/@CureSYNGAP1   

11.2k Twitter https://twitter.com/cureSYNGAP1 

45k Insta https://www.instagram.com/curesyngap1/ 

$CAMP stock is at $3.62 on 26 Nov. ‘25 https://www.google.com/finance/beta/quote/CAMP:NASDAQ

Happy Thanksgiving… Thursday, November 27, 2025. Week 48.

https://curesyngap1.org/clinical-trials/ Emerald from Praxis for Relutrigine and DeeP Ocean from Longboard for Bexicaserin.  Check them out, screen for both.  See what you can do!

Hectic with #MIHealthSummit, Tony at home, an NHS visit, Ultrabootcamp, not to mention prepping for the most elaborate conference yet! 

MI https://www.linkedin.com/posts/raymond-puerini_medtech-patientengagement-mihealthsummit-activity-7392679496266436608-7kWo 

Bootcamp https://www.linkedin.com/posts/graglia_rarebootcamp-syngap1-precisionmedicines-activity-7396249525214031872-RvsX 

ProMMiS - Meet committed clinicians, get great care and build the future of SYNGAP1 clinical medicine.

Upcoming Stanford enrollment dates: December 10–11, 2025: 2 slots, February 25–26, 2026: 2 slots, May 27–28, 2026: 2 slots to enroll email [email protected]   

GIVING TUESDAY

1 week to go.  Set up an Unlock fundraising page now and send it out BEFORE Tuesday December 2nd! cureSyngap1.org/unlock or for more info: https://curesyngap1.org/podcasts/syngap10/time-to-unlock-their-tomorrow-raise-funds-camp4-our-name-s10e188/

Video: https://www.linkedin.com/posts/curesyngap1_curesyngap1-syngap1-activity-7399492685474009088-DXWI

CONFERENCE

- Record Headcount over 20% increase: Scientific: 237 & Caregiver Connect: 180 (of which 26 patients)

- Agendas are up: https://curesyngap1.org/calendar/cure-syngap1-conference-2025-hosted-by-srf/

- Volunteer with us: [email protected]  

PAPERS

PUBMED at 52, and low. Clinical research! 181 / 359 = more than half of the knowledge on S1 in the past 4 year!

https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2025-2025&sort=date

Movement disorder comparison: https://www.medrxiv.org/content/10.1101/2025.11.04.25339413v1.full.pdf

SLEEP - SRD Patients are the worst https://pubmed.ncbi.nlm.nih.gov/41138043/ aligned with CSH paper https://pmc.ncbi.nlm.nih.gov/articles/PMC8472329/ 

TODOS

SOCIAL MATTERS

4,468 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ 

1,480 YouTube.  https://www.youtube.com/@CureSYNGAP1   

11.2k Twitter https://twitter.com/cureSYNGAP1 

45k Insta https://www.instagram.com/curesyngap1/ 

$CAMP stock is at $3.62 on 26 Nov. ‘25 https://www.google.com/finance/beta/quote/CAMP:NASDAQ

Sunday, November 9, 2025. Week 46.

End of year campaign: UNLOCK THEIR TOMORROW, curesyngap1.org/unlock   

Why now? UNLOCK It’s giving season. Count our blessings and share what we have.  CS1 has moved mountains this year: Staff, ProMMiS, etc. But we are just starting…

Every single family should give and should solicit their friends.  Yes, it’s a tough time.  Yes, people have other causes.  No (most of) your friends don’t have a SynGAPian.

Miss 100% of the shots you don’t take.  And remember, donors learn about what they give to, so even small donations cause huge changes in awareness.

Go to our Champions page: https://curesyngap1.org/champions-of-hope/

These families get something key: CURE SYNGAP1 is in it for the long run, unlike EVERYONE ELSE you are supporting.  Great that you are doing schools, horses, girl scouts, etc, but the only people asking you for money right now that are going to be fighting for your kid in 5, 10, or 50 years, is CURE SYNGAP1.  The only group who won’t kick your family/loved one out of our community when your SynGAPian bites one of our staff or elopes from a meeting across streets.  Also us.  The people who understand SYNGAP1 the best.  Right here.

Technicals, we could not make this easier!

Take 5 minutes to build your own fundraiser or simply email friends/family/co-workers/church associates/other kids’ sports team parents/etc. It’s uncomfortable but essential. 

It’s so darn easy to give - 

💻 ONLINE @ CURESYNGAP1.ORG/UNLOCK Use Credit Card, PayPal, Venmo, Google & Apple

📱 PHONE - Text UNLOCK to 71777, then follow the instructions.

📬 MAIL A CHECK CURE SYNGAP1, PO Box 515734 Los Angeles, CA 90051-5150

Two more questions:

?1: Aren’t we done now with CAMP4?  No.  Three reasons: Clock, Count, unknowns.  

Clinical research.  Behavioral interventions.  Optimal medications.  Missense research.  Patient discovery.  Drug repurposing.  Family support.  Global coordination.

?2: Our name is a demand: CURE SYNGAP1, and we are not there yet.   SRF suggested that funding science was enough, boy were we wrong.

We need patients to be Support.  Educate.  Activate.  Coordinate.  I discussed the many ways a PAG matters in #S10e181.  (I missed data & should have clinical separate, will redo.) https://curesyngap1.org/podcasts/syngap10/patient-advocacy-groups-matter-party-friday-syngap1conf-soon-elopement-s10e181/

Every single family needs to help us raise funds.  Every single one.

SOCIALS

4,426 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ 

1,480 YouTube.  https://www.youtube.com/@CureSYNGAP1   

11k Twitter https://twitter.com/cureSYNGAP1 

45k Insta https://www.instagram.com/curesyngap1/ 

$CAMP stock is at $4.25 on 7 Nov. ‘‘25 https://www.google.com/finance/beta/quote/CAMP:NASDAQ

Saturday, October 25, 2025. Week 43.

Time to advocate, ELF on the Hill, support available, apply now: https://www.linkedin.com/posts/everylifeorg_were-excited-to-join-everyone-on-capitol-activity-7384625926333943808-mO1U/

PUBMED at 47, and low. Clinical research!

https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2025-2025&sort=date

- CHOP EEG ProMMiS ​​https://www.neurology.org/doi/10.1212/WNL.0000000000214148?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed

- COMMUNICATION #ORCA https://acamh.onlinelibrary.wiley.com/doi/full/10.1111/jcpp.70063

Doing surveys gets us into papers like ORCA, helps us raise awareness of SRD.  This one on AI is really interesting: https://redcap.tch.harvard.edu/redcap_edc/surveys/?s=YFHYH7T7LTPAL44X

Newsletter #47

https://mailchi.mp/curesyngap1.org/unlock-their-tomorrow-issue47 

IPM on SRD AAV https://www.insideprecisionmedicine.com/topics/precision-medicine/gene-therapy-reverses-syngap1-brain-disorder-symptoms-in-mice/

NYT Take on #Autism is very good, thank you Azeen Ghorayshi

Split the Autism Spectrum: https://www.nytimes.com/2025/10/01/health/autism-spectrum-neurodiversity-kennedy.html?unlocked_article_code=1.q08.NXEA.fg5ulHeTHUeJ&smid=url-share quotes Jackie K, explores argument for Profound & Severe Autism as a category. 

Our own Jackie Kancir has a great substack, listen to it in her voice here: https://jkancir.substack.com/p/autism-is-not-my-daughter-nor-her

Tylenol: https://www.nytimes.com/video/science/100000010414944/trump-pushes-unproven-link-between-tylenol-and-autism.html

Sign up for Citizen Health:

https://www.citizen.health/partners/srf

CURE SYNGAP1 Conference 2025 Atlanta: https://curesyngap1.org/events/conferences/cure-syngap1-conference-2025-hosted-by-srf/

USE YOUR ICD-10 F78.A1 #S10e185 https://www.youtube.com/watch?v=dale0NbxDpU

SOCIALS

4,417 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ 

1,470 YouTube.  https://www.youtube.com/@CureSYNGAP1   

11k Twitter https://twitter.com/cureSYNGAP1 

45k Insta https://www.instagram.com/curesyngap1/ 

Episode 187 of #Syngap10 #CureSYNGAP1