50.7K
Downloads
212
Episodes
Over 1,600 families are caring for a loved one with the rare disease ”SynGAP” resulting from a variant of the SYNGAP1 gene. This weekly podcast is for them. -A quick summary of the latest news in the space. The host is Mike Graglia, co-founder & managing director of CURE SYNGAP1. CURE SYNGAP1 is a parent-led public charity in the US that strives to accelerate research into treatments for SYNGAP1 so that we can help our loved ones in a timeframe that matters. Learn more at https://cureSYNGAP1.org
Episodes
Jul 5, 2026
Jul 5, 2026
9 min
#Future4Ford. 2Q26 #SYNGAP1Census = 1,806 Patients (+45) $CAMP #ValproateDemandBetter #S10e212
Saturday, July 4, 2026 - Week 27
#Future4Ford! Already at $3,500+! Share. Thank you to the Family.
This is the model for newly diagnosed, call us, set up a page, help us help your loved one. cureSYNGAP1.org/4Ford
CENSUS - 1,806 https://curesyngap1.org/blog/syngap1-census-2026-update-45-q2-total-1806/
Per https://docs.google.com/spreadsheets/d/1oJwMysR2wyTxe91zLlKJglNa0NySPxkBF0PRiV6mBmM/edit?usp=sharing, no change in Germany, UK, or Netherlands. This is clearly wrong.
MERCH - 9 days left!
New t-shirts! Buy for everyone! There are some funny ones this year and the classics. cureSYNGAP1.org/Bonfire
CAMP4 has been busy!
Meeting with one of our families: https://www.linkedin.com/posts/syngap1-share-7473374060614201345-SeKO/
Shoutout on NASDAQ: https://www.linkedin.com/posts/camp4-therapeutics_syngap1awareness-regrna-syngap1-activity-7474823632972820480-UMqi
$CAMP closed at $4.43 yesterday. https://www.google.com/finance/beta/quote/CAMP:NASDAQ
BONES – This is not medical advice, I am not a doctor. Talk to a doctor AND know your facts.
Valproate is the active Ion, it comes from Valproic Acid (Depakene), Sodium Valproate or Divalproex Sodium (Depakote). They all cause bone loss by stoping stomach from absorbing, then robbing bones, then flushing out. More and longer is worse. Vitamin D and Calcium can help but they need to start early and it’s better to just find another drug. Also insurance likes it because it’s cheap and old – demand better.
“Valproic acid and clobazam were commonly used for epilepsy treatment, while risperidone, aripiprazole, and guanfacine were commonly used for behavior management. Valproate and lamotrigine were more effective at reducing seizure frequencies or maintaining seizure freedom than other anti-seizure medications.” Clinical signatures of SYNGAP1-related disorders through data integration https://pmc.ncbi.nlm.nih.gov/articles/PMC12419475/
THINGS TO LOOK FORWARD TO…
5TH SCRAMBLE FOR SYNGAP, SC – 91 days till October 3rd
Classic case of a small event becoming an institution! cureSYNGAP1.org/Scramble26
SHOOT FOR SYNGAP, UT – 133 days till November 14th
curesyngap1.org/calendar/shoot-for-syngap1/
FIGHT FOR FELIPE, MA - 148 days till November 29th
CURE SYNGAP1 CONFERENCE - 152 days until December 3rd & 4th
cureSYNGAP1.org/Denver rooms available: cureSYNGAP1.org/denhyatt for $159. In on Wed, out on Saturday.
PUBMED
Pubmed 2026 is at 40. +13 vs the week. (61 last year was +9) We are already at the 4th highest year. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date
Thanks to Dr. Stephen Smith for this exciting paper, especially in the context of ASOs…
Genetic rescue of disrupted synaptic protein interaction network dynamics following SYNGAP1 reactivation https://pubmed.ncbi.nlm.nih.gov/42362191/
USA 🇺🇲: Use your ICD-10, F78.A1
SOCIAL MATTERS
5,106 LinkedIn. https://www.linkedin.com/company/curesyngap1
1.59k YouTube. https://www.youtube.com/@CureSYNGAP1
11.1k Twitter https://twitter.com/cureSYNGAP1
43.7k Insta https://www.instagram.com/curesyngap1
Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10
Episode 212 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy
Jun 25, 2026
Jun 25, 2026
9 min
Friday, June 26, 2026 - Week 26
BIO was good. Need a mouse lab to test molecules all year long.
https://www.linkedin.com/posts/graglia_syngap-syngap1-mousemodels-ugcPost-7476041484408901633-Zldd/
MDBR was big, not just Justin A.! Thank you Dr. McKee, Heather and others. cureSYNGAP1.org/MDBR26Recap
MERCH - 19 days left!
New t-shirts! Buy for everyone! There are some funny ones this year and the classics. cureSYNGAP1.org/Bonfire
GENETIC TESTING
Valuable resource as you have questions. curesyngap1.org/GT
WARRIORS - Phoenix and Kenna
THINGS TO LOOK FORWARD TO…
WEBINAR: Understanding ASOs & Informed Consent
June 30 4:30 ET curesyngap1.org/calendar/understanding-asos-informed-consent/
5TH SCRAMBLE FOR SYNGAP, SC – 99 days till October 3rd
Classic case of a small event becoming an institution! cureSYNGAP1.org/Scramble26
SHOOT FOR SYNGAP, UT – 141 days till November 14th
FIGHT FOR FELIPE, MA - 155 days till November 29th
CURE SYNGAP1 CONFERENCE - 159 days until December 3rd & 4th
cureSYNGAP1.org/Denver rooms available: cureSYNGAP1.org/denhyatt for $159. In on Wed, out on Saturday.
PUBMED
Pubmed 2026 is at 38. +12 vs the week. (61 last year was +9) We are already at the 4th highest year. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date
Props to Dr. Frazier for yet another paper on SYNGAP1 based on his study, one of the best grants ever.
https://onlinelibrary.wiley.com/doi/10.1111/dmcn.70337
USA 🇺🇲: Use your ICD-10, F78.A1
SOCIAL MATTERS
5,074 LinkedIn. https://www.linkedin.com/company/curesyngap1
1.59k YouTube. https://www.youtube.com/@CureSYNGAP1
11.1k Twitter https://twitter.com/cureSYNGAP1
43.8k Insta https://www.instagram.com/curesyngap1
$CAMP closed at $3.92 yesterday.
https://www.google.com/finance/beta/quote/CAMP:NASDAQ
Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10
Episode 211 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy
Jun 19, 2026
Jun 19, 2026
9 min
Friday, June 19, 2026 - Week 25
June 21 is SYNGAP1 Awareness Day, but we have made it SYNGAP1 Awareness month! Why 6/21? Because 6p21.32 Donate! cureSYNGAP1.org/Donate
#ThisIsOursToLose & #BurdenHopeProgress watch #S10e208 https://curesyngap1.org/podcasts/syngap10/tony-update-thisisourstolose-more-great-results-from-camp4-nightofimpact-in-9-days-s10e208/
New family email, very good, lots of questions. It’s all here. Reach out, we are here for you and you are welcome in this community – you are part of it whether you like it or not.
- Raise money. Join our host committee for 2nd SF event next year.
- Believe that we are doing the best we possibly can, and you would be adrift without a PAG. If you think this is painful, imagine if we weren't here!
- Register for the Conference. Book tickets to DEN now. cureSYNGAP1.org/Denver
- Join us -- make this org better for all of us and all our kids for all their lives.
Complex work doesn't fit neatly in 10 minutes anymore... Health Economics and Market Access work is going well, we will put out an RFP shortly.
NATURAL HISTORY
Goes On! Make sure you are in it. https://curesyngap1.org/resources/studies/syngap1-prommis/
Orlando/McKee Grant "Validating Remote Developmental Assessments in SYNGAP1-Related Disorders" cureSYNGAP1.org/PR49
🤖 ARI Sign up now, s/he keeps getting better, and then connect to Citizen Health, if you are not on Citizen Health, fix that.
KUDOS
- The fifth MDBR, Justin Albrecht rode 70 remote in NC. Raised $2k.
- Rachel Jasiczek (Yah-she-check) was a guest on Remarkable Futures Podcast - https://open.spotify.com/episode/7dYmHcXEu58H4C8VCoZ9V1?si=x3xvui86TY2cyGHyS3mGDQ
- Collective: CURE SYNGAP1 Collective - cureSYNGAP1.org/PR48 Collective page - cureSYNGAP1.org/Collective
More fundraisers!
WARD - Shoot for SYNGAP on November 14th in Utah! https://fb.watch/HRnwf9FnEB/
Another in Boston in the works…
WEBINAR: Understanding ASOs & Informed Consent
June 30 4:30 ET https://curesyngap1.org/calendar/understanding-asos-informed-consent/
5TH SCRAMBLE FOR SYNGAP, SC – 106 days till October 3rd
Classic case of a small event becoming an institution!
CURE SYNGAP1 CONFERENCE - 166 days until December 3rd
cureSYNGAP1.org/Denver rooms available: cureSYNGAP1.org/denhyatt for $159. In on Wed, out on Saturday.
USA: use your ICD-10, F78.A1: https://onlinelibrary.wiley.com/doi/10.1002/epi.70142
PUBMED
Pubmed 2026 is at 37. +12 vs the week. (61 last year was +9) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date
SOCIAL MATTERS
5,058 LinkedIn. https://www.linkedin.com/company/curesyngap1
1.58k YouTube. https://www.youtube.com/@CureSYNGAP1
11.1k Twitter https://twitter.com/cureSYNGAP1
45k Insta https://www.instagram.com/curesyngap1
$CAMP closed at $4.13 yesterday.
https://www.google.com/finance/beta/quote/CAMP:NASDAQ
Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10
Episode 210 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy
Jun 11, 2026
Jun 11, 2026
9 min
Wednesday, June 10, 2026 - Week 24
#NightOfImpact was 15 Days ago!
Photos: https://jeaniehorton.pixieset.com/curesyngap1nightofimpact2026/
Impact: $800k+, of which $300 was our match.
Industry: Multiple
Academics & Clinicians: Stanford, Berkeley & UCSF. Cross-pollination is always good.
Speakers: Ash, John, Kathryn, Helen Willsey & Me. Only got a video of John, which was a mistake. If you took one, please share. Here is John: https://www.linkedin.com/posts/graglia_still-reflecting-on-our-inaugural-cure-syngap1-ugcPost-7467439971294048256-cUf9/
Dr. Willsey Rocks.
Willsey Press Release https://www.eurekalert.org/news-releases/1130924 (both were at NoI).
A few other points on HRW, as we call her.
Simons: https://curesyngap1.org/blog/future-research-for-syngap1-how-helen-willsey-broke-new-ground-frogs-in-hand/
Willsey in Neuron 2021: https://www.cell.com/neuron/pdf/S0896-6273(21)00002-7.pdf (Frogs)
Birtele in Nature Neuroscience 2023: https://www.nature.com/articles/s41593-023-01477-3 (Confirms)
McCluskey in Nature Communications 2025: https://www.nature.com/articles/s41467-025-57342-3 (GI)
Kostyanovskaya in BioRxiv 2025: https://pubmed.ncbi.nlm.nih.gov/39677731 (cilium)
5TH SCRAMBLE FOR SYNGAP, SC – 114 days
Classic case of a small event becoming an institution!
CURE SYNGAP1 CONFERENCE - 175 days
USA: use your ICD-10, F78.A1: https://onlinelibrary.wiley.com/doi/10.1002/epi.70142
PUBMED
Pubmed 2026 is at 35. +11 vs the week. (61 last year was +9) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date
SOCIAL MATTERS
5,045 LinkedIn. https://www.linkedin.com/company/curesyngap1
1.58k YouTube. https://www.youtube.com/@CureSYNGAP1
11.1k Twitter https://twitter.com/cureSYNGAP1
45k Insta https://www.instagram.com/curesyngap1
$CAMP closed at $4.34 today.
https://www.google.com/finance/beta/quote/CAMP:NASDAQ
Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10
Episode 209 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy
May 19, 2026
May 19, 2026
9 min
Tuesday, May 19, 2026 - Week 21
Personal Update via Syngap Stories:
Page: cureSYNGAP1.org/stories41
Post: https://www.linkedin.com/posts/syngap1stories-syngap1-curesyngap1-share-7462125026276777984-OVBr
#ThisIsOursToLose - Three steps to engaging friends with CURE SYNGAP1.
- Share CURE SYNGAP1 Video - Burden, Hope & Progress - 1.1k views in 11 days.
cureSYNGAP1.org/Burden https://www.linkedin.com/posts/syngap1-curesyngap1-raredisease-share-7458298251893448706-jfWF
- Send IMPACT REPORT - Tool for family, newly diagnosed & Fundraising.
cureSYNGAP1.org/Impact or cureSYNGAP1.org/Impact25
- Ask to Donate
CAMP4
Joining us at the Night of Impact (with Stoke, Acadia, BioMarin, Gondola & others) and…
INAUGURAL SF NIGHT OF IMPACT, CA – 9 days
Join us this is our only Gala for 2026!
5TH SCRAMBLE FOR SYNGAP, SC – 137 days
Classic case of a small event becoming an institution!
CURE SYNGAP1 CONFERENCE - 198 days.
USA: use your ICD-10, F78.A1: https://onlinelibrary.wiley.com/doi/10.1002/epi.70142
PUBMED
Pubmed 2026 is at 31. +10 vs the week. (61 last year was +9) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date
SOCIAL MATTERS
4,964 LinkedIn. https://www.linkedin.com/company/curesyngap1
1.58k YouTube. https://www.youtube.com/@CureSYNGAP1
11.1k Twitter https://twitter.com/cureSYNGAP1
45k Insta https://www.instagram.com/curesyngap1
$CAMP closed at $4.56 yesterday.
https://www.google.com/finance/beta/quote/CAMP:NASDAQ
Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10
Episode 208 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy
May 8, 2026
May 8, 2026
9 min
Friday, May 8, 2026 - Week 19
CURE SYNGAP1 STRATEGY WORKING
Our strategy has always been to derisk SYNGAP1 so that industry will invest and bring their skill and capital to bear. We leverage donor dollars to maximize impact. Yesterday was a great example:
EARNINGS REPORTS
CAMP4 1Q26 Results: $99M https://investors.camp4tx.com/news-releases/news-release-details/camp4-reports-first-quarter-2026-financial-results-and-corporate
We submitted our first regulatory filing for CMP-002 in Australia which positions us to initiate a global first-in-human Phase 1/2 clinical trial in the second half of 2026.
Stoke 1Q26 Results: $411M https://investor.stoketherapeutics.com/news-releases/news-release-details/stoke-therapeutics-announces-first-quarter-2026-financial
Lead optimization is underway to identify a clinical candidate for the treatment of SYNGAP1 in 2026. SYNGAP1 is a severe and rare genetic neurodevelopmental disease.
Praxis 1Q26 Results: $1.4B https://investors.praxismedicines.com/news-releases/news-release-details/praxis-precision-medicines-provides-corporate-update-and-19
Praxis remains on track to nominate a development candidate for each of its three early stage ASO therapeutic initiatives in the first half of 2026: PRAX-090 is designed to address SYNGAP1 loss-of-function (LoF) mutations, a leading cause of severe intellectual disability and epilepsy in DEEs.
#CompetitionIsGoodForThePatient
KCNT1 Big Day today - Congratulations
Post: https://www.linkedin.com/posts/graglia_kcnt1-share-7458560855744618496-X10d
Press Release: https://www.linkedin.com/posts/kcnt1-kcnt1-epilepsy-ugcPost-7458487179149787136-kH7c/
WATCH & SHARE OUR VIDEO
Watch and share the new SYNGAP1 Video, it is excellent and helps explain our cause to families and friends. We need to turn them into supporters and donors.
cureSYNGAP1.org/SYNGAP1 -> https://youtu.be/pO3ayASBiEk
INAUGURAL SF NIGHT OF IMPACT, CA – 20 days
Join us this is our only Gala for 2026!
5TH SCRAMBLE FOR SYNGAP, SC – 148 days
Classic case of a small event becoming an institution!
USA: use your ICD-10, F78.A1: https://onlinelibrary.wiley.com/doi/10.1002/epi.70142
PUBMED
Pubmed 2026 is at 28. +9 vs the week. (61 last year was +9) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date
https://pubmed.ncbi.nlm.nih.gov/42093631/ ADHD in patients with #DLG2 #NRXN1 #SHANK3 #SYNGAP1
SOCIAL MATTERS
4,940 LinkedIn. https://www.linkedin.com/company/curesyngap1
1,569 YouTube. https://www.youtube.com/@CureSYNGAP1
11.1k Twitter https://twitter.com/cureSYNGAP1
45k Insta https://www.instagram.com/curesyngap1
$CAMP closed at $4.46. https://www.google.com/finance/beta/quote/CAMP:NASDAQ
$STOK closed at $32.89. https://www.google.com/finance/beta/quote/STOK:NASDAQ
$ACAD closed at $22.40. https://www.google.com/finance/beta/quote/ACAD:NASDAQ
$PRAX closed at $330.02. https://www.google.com/finance/beta/quote/PRAX:NASDAQ
Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10
Episode 207 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy
May 6, 2026
May 6, 2026
9 min
Wednesday, May 6, 2026 - Week 19
Congrats to GETA, CURE SYNGAP1 Australia & CAMP4 for a great weekend. https://www.linkedin.com/posts/syngap1-epilepsy-ugcPost-7457791427486466048-j8SB
WEBINARS!
CURE-ID Webinar tomorrow! Register now. Thu May 7, 2026 1:30pm – 3pm (PDT) cureSYNGAP1.org/cureID
Next week, especially NY families, while you are registering, please make sure to go to this one with Dr. Buxbaum from Mt. Sinai. curesyngap1.org/seaver https://www.linkedin.com/posts/curesyngap1_curesyngap1-syngap1-rarediseaseresearch-activity-7457507565527044096-dDEK
Longitudinal Data Matters - Every six months or more!
Study list!
- CURE SYNGAP1 CONNECT http://curesyngap1.org/connect
- Citizen Health https://www.citizen.health/ai-advocate/syngap1
- Combined Brain
- ProMMiS https://www.linkedin.com/feed/update/urn:li:activity:7450196488300728320 & Rare-X, the same week.
- OR DSC. #S10e
- CURE-ID for Drug responses. Webinar: Thu May 7, 2026 1:30pm – 3pm (PDT) cureSYNGAP1.org/cureID
6th ANNUAL SPRINT FOR SYNGAP1, we raised over $300k! (Gross)
Thank you Tavillas for raising over $170k this will go to the Missense fund. We spent over $¼M on missense last year.
Thank you Emily Barnes for hosting a New England event for families. https://www.linkedin.com/posts/ecarlisle_we-had-an-incredible-sprint-for-syngap-ugcPost-7457845816502845440-nJCd
Thank you to Sara and Sarah for the Virginia event. GREAT WORK. https://www.linkedin.com/posts/sarah-sakly-648544337_syngap1-raredisease-curesyngap1-ugcPost-7456869206341464065-VESz
Thank your Rifton for the donation of the tricycle. Congratulations Matthew! https://www.linkedin.com/posts/curesyngap1_syngap1-curesyngap1-sprint4syngap-activity-7457806850676281344--JR-
Thank you to the Edouard Family! cureSYNGAP1.org/Crafts26
INAUGURAL SF NIGHT OF IMPACT, CA – 22 days
Join us this is our only Gala for 2026!
5TH SCRAMBLE FOR SYNGAP, SC – 150 days
Classic case of a small event becoming an institution!
USA: use your ICD-10, F78.A1: https://onlinelibrary.wiley.com/doi/10.1002/epi.70142
PUBMED
Pubmed 2026 is at 27. +10 vs the week. (61 last year was +9) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date
SOCIAL MATTERS
4,931 LinkedIn. https://www.linkedin.com/company/curesyngap1
1.56k YouTube. https://www.youtube.com/@CureSYNGAP1
11.1k Twitter https://twitter.com/cureSYNGAP1
45k Insta https://www.instagram.com/curesyngap1
$CAMP closed at $3.97 Friday.
https://www.google.com/finance/beta/quote/CAMP:NASDAQ
Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10
Episode 206 of #Syngap10 #CureSYNGAP1 #Podcast
Apr 21, 2026
Apr 21, 2026
9 min
Monday, April 20, 2026 - Week 17
CURE SYNGAP1 joins the Haystack Project in petitioning FDA for more clarity.
Show your support here: https://www.regulations.gov/document/FDA-2026-P-3666-0001
Paragraph 1 – Share information about you and SYNGAP1.
Paragraph 2 – Seizures are hard to count while X, Y and Z are major burdens but FDA wants nice countable seizures, this makes it hard to develop drugs.
Paragraph 3 – How could “clinically meaningful” endpoints potentially help your community and drug developers? How could a study design other than a ‘randomized clinical trial’ help? How could FDA consulting with disease-specific experts help?
Closing – Finish your letter with anything along these lines: We support the framework for all rare set diseases in Haystack’s petition. We don’t believe FDA has to lower the evidentiary bar to approve treatments for our diseases. Randomization isn’t always possible. New scientific methods should be considered. Endpoints specific to our disease should be considered. We urge FDA to open a rulemaking so we can have a legally binding regulation.
Board changes, thank you to everyone. https://www.linkedin.com/posts/curesyngap1_curesyngap1-syngap1-patientadvocacy-activity-7450528611339616256-4MJF?utm_source=share&utm_medium=member_desktop&rcm=ACoAAAAD8f4B7JC4TMss45Q8hrsq5kiceI0Z8HE
Press Release cureSYNGAP1.org/PR45
US, use your ICD-10, F78.A1: https://onlinelibrary.wiley.com/doi/10.1002/epi.70142
Study list!
- Citizen Health https://www.citizen.health/ai-advocate/syngap1
- Combined Brain (May 1 & 2 in NorCal), https://docs.google.com/presentation/d/1IjaHILXj7AlBDlbTJgvYrkBS_0bnI8VCnTIiPXJ7JGM/edit?usp=sharing
- Rare-X, the same week.
- DSC and Cook’s are coming soon!
- CURE-ID for Drug responses.
CURE-ID is cool. https://cure.ncats.io/home (Webinar coming)
Webinar: Thu May 7, 2026 1:30pm – 3pm (PDT) cureSYNGAP1.org/cureID
6th ANNUAL SPRINT FOR SYNGAP1, EVERYWHERE – 5 days - $207k! Go Tavilla.
17 teams raised $265K last year; this year, we have 20+ teams!
https://curesyngap1.org/calendar/sprint4syngap-2026
Thank your Rifton for the donation of the tricycle.
Email today: https://mailchi.mp/curesyngap1.org/sprint-for-syngap-2026-one-community-one-goal?e=17610baa03
INAUGURAL SF NIGHT OF IMPACT, CA – 38 days
Join us this is our only Gala for 2026!
5TH SCRAMBLE FOR SYNGAP, SC – 166 days
Classic case of a small event becoming an institution!
PUBMED
Pubmed 2026 is at 26. +9 vs the week. (61 last year was +9) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date
SOCIAL MATTERS
4,891 LinkedIn. https://www.linkedin.com/company/curesyngap1
1.55k YouTube. https://www.youtube.com/@CureSYNGAP1
11.1k Twitter https://twitter.com/cureSYNGAP1
45k Insta https://www.instagram.com/curesyngap1
$CAMP closed at $4.67 Friday.
https://www.google.com/finance/beta/quote/CAMP:NASDAQ
Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10
Episode 205 of #Syngap10 #CureSYNGAP1 #Podcast
Apr 14, 2026
Apr 14, 2026
9 min
Tuesday, April 14, 2026 - Week 16
Census is 1,761
https://curesyngap1.org/blog/syngap1-census-2026-update-54-q1-total-1761
Trip to Texas for UT Arlington and Cook Children's
- Systems innovation with Dr. Lal and Dr. Perry
- My post: https://www.linkedin.com/posts/graglia_raredisease-activity-7448087944466259970-MADW?utm_source=share
- *** Dr. Lal’s post: *** https://www.linkedin.com/posts/dennis-lal-71a8988a_epilepsies-neurodevelopmentaldisorders-raredisease-activity-7449111793991577600-sfXZ
ProMMiS patients - 164 unique patients, 96 of whom have had 2 visits & 46 others 3-5 visits
https://curesyngap1.org/resources/studies/syngap1-prommis
Citizen - 289 registered
https://www.citizen.health/ai-advocate/syngap1
Victoria Arteaga representing CURE SYNGAP1 at IBE Global Leaders Meeting
Newsletter 51 www.cureSYNGAP1.org/NL51
SYNGAP1 Snippets
You are in this for life.
Board meetings to approve budgets, fundraising has never been more important.
6th ANNUAL SPRINT FOR SYNGAP1, EVERYWHERE – 12 days - $169k! Go Tavilla.
17 teams raised $265K last year; this year, we have 24 teams who have raised almost $170K so far.
https://curesyngap1.org/calendar/sprint4syngap-2026
INAUGURAL SF NIGHT OF IMPACT, CA – 46 days
Join us this is our only Gala for 2026!
5TH SCRAMBLE FOR SYNGAP, SC – 174 days
Classic case of a small event becoming an institution!
PUBMED
Pubmed 2026 is at 24. +8 vs the week. (61 last year was +9) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date
SOCIAL MATTERS
4,869 LinkedIn. https://www.linkedin.com/company/curesyngap1
1.55k YouTube. https://www.youtube.com/@CureSYNGAP1
11.1k Twitter https://twitter.com/cureSYNGAP1
45k Insta https://www.instagram.com/curesyngap1
$CAMP closed at $4.64 yesterday.
https://www.google.com/finance/beta/quote/CAMP:NASDAQ
Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10
Episode 204 of #Syngap10 #CureSYNGAP1 #Podcast
Apr 3, 2026
Apr 3, 2026
9 min
Friday, April 3, 2026 - Week 14
Just back from the DSC-III Kickoff Meeting! As announced back in September 2025. Really strong group of clinicians.
https://dsc.rarediseasesnetwork.org/patient-advocacy-groups
More on DSC in #S10e184 https://curesyngap1.org/podcasts/syngap10/dsc-rdcrn-ncats-nih-press-aav-in-cell-srf-at-cb-scramble-for-syngap1-s10e184/
We will have sites at SYNGAP1 established doctors, Dr. Wiltrout at Boston Children's Hospital/Harvard, Dr. Holder at Baylor and our very own ProMMiS Doctors: Knowles at Stanford / Dr. Abbott at Colorado. AND, excitingly, these two new locations:
Rush University Medical Center (Rush) led by Dr. Dr. Liz Berry-Kravis.
University of Alabama at Birmingham led by Dr. Martina Bebin.
Interestingly we are paired with PMS aka SHANK3 so the comparisons will naturally arise. Both post-synaptic, they are a half step ahead of us. (We will catch up!) SHANK3 and SYNGAP1 have lots in commons: PSD, Synaptic Plasticity, mTOR. Differences, we have more epilepsy, they have more Catatonia (see Table 2 in Trelles 2026 https://pubmed.ncbi.nlm.nih.gov/41895438/).
After that I met with Dr. Xin Tang from BCH who is working on some exciting potential therapies and then over to CAMP4, who is moving at light speed.
ILAE Rare Epilepsy Big Data Task Force for 4 years! Makes me think about data…
Where does SYNGAP1 Data Live?
- Citizen.Health Retrospective
- ProMMiS Clinical
- Rare-X PRO
- Now the DSC will have both
- Combined Brain Registry and EEG Database.
- In Argentina SYNGAP1 Registry, potentially expanding to Chile and Colombia.
- In the EU there is PATRE part of EURAS.
- In the UK, it seems largely via NHS.
- In China, I don’t know but this paper shows us someone has 99 people: https://pubmed.ncbi.nlm.nih.gov/41914539/
- Where else?
SYNGAP1 is having a moment, we need project manager volunteers.
SPRINT FOR SYNGAP1, EVERYWHERE – 21 days - $132k!
Get on the map!
https://curesyngap1.org/calendar/sprint4syngap-2026
INAUGURAL SF NIGHT OF IMPACT, CA – 55 days
Join us this is our only Gala for 2026!
5TH SCRAMBLE FOR SYNGAP, SC – 183 days
Classic case of a small event becoming an institution!
PUBMED
Pubmed 2026 is at 22. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date
SOCIAL MATTERS
4,822 LinkedIn. https://www.linkedin.com/company/curesyngap1
1.55k YouTube. https://www.youtube.com/@CureSYNGAP1
11.1k Twitter https://twitter.com/cureSYNGAP1
45k Insta https://www.instagram.com/curesyngap1
$CAMP closed at $4.47 today.
https://www.google.com/finance/beta/quote/CAMP:NASDAQ
Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10
Episode 203 of #Syngap10 #CureSYNGAP1 #Podcast