Friday, January 16, 2026 - Week 3

Stoke Phase 3 Rapid Recruitment - A timeline that is ours to beat! https://investor.stoketherapeutics.com/news-releases/news-release-details/stoke-therapeutics-announces-updates-timelines-completion

If Marcin can make it from Poland, you can make it from where you are! cureSYNGAP1.org/Marcin

CAMP4 Website is great and features Dani Williams! https://www.camp4tx.com/

Newsletter is out! https://cureSYNGAP1.org/NL49

Sara Driscoll Genetic Testing Story - Share it or copy it! https://cureSYNGAP1.org/GenTest

Pubmed 2026 is at 3! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date

SOCIAL MATTERS 4,604 LinkedIn. https://www.linkedin.com/company/curesyngap1/ 1,510 YouTube. https://www.youtube.com/@CureSYNGAP1 11.2k Twitter https://twitter.com/cureSYNGAP1 45k Insta https://www.instagram.com/curesyngap1/

$CAMP stock is at $5.78 on 15 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 196 of #Syngap10 #CureSYNGAP1 #Podcast

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 curesyngap1.org/kaylie

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:

1. Rare & SYNGAP1 were both very visible, posters with our Logo and names of staff were seen! Posters: https://www.linkedin.com/posts/graglia_syngap1-curesyngap1-activity-7408291479187755008-rMru
2. Our conference was standing room only and had investors! Even got a mention in their research report! https://www.investing.com/news/analyst-ratings/cantor-fitzgerald-reiterates-overweight-rating-on-camp4-therapeutics-stock-93CH-4403281
3. ProMMiS Launch was a massive win for patients. Collaboration.
4. Praxis and Lundbeck recruited for exciting drugs and CAMP4 talked about their ASO and recruiting next year.
5. Our community's presence was felt well into AES.

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 Congrats to Novartis on approval of the first Gene Therapy to Cure SMA!

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

TODOS

1. Sign up for Citizen Health: https://www.citizen.health/partners/srf
2. USE YOUR ICD-10 F78.A1 #S10e185 https://www.youtube.com/watch?v=dale0NbxDpU
3. Go to CURE SYNGAP1 Conference 2025 Atlanta: https://curesyngap1.org/events/conferences/cure-syngap1-conference-2025-hosted-by-srf/

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

Episode 190 of #Syngap10 #CureSYNGAP1

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 prommis@curesyngap1.org

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: stacey@cureSYNGAP1.org

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

1. Sign up for Citizen Health: https://www.citizen.health/partners/srf
2. USE YOUR ICD-10 F78.A1 #S10e185 https://www.youtube.com/watch?v=dale0NbxDpU
3. Go to CURE SYNGAP1 Conference 2025 Atlanta: https://curesyngap1.org/events/conferences/cure-syngap1-conference-2025-hosted-by-srf/

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

Episode 189 of #Syngap10 #CureSYNGAP1