SynGAP10 weekly 10 minute updates on SYNGAP1

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Over 1200 families are caring for a loved one with the rare disease ”SynGAP” resulting from a variant of the SYNGAP1 gene. This 10 minute 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 the SynGAP Research Fund. SRF is a parent-led, all volunteer 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://www.syngapresearchfund.org/

Episodes

Tuesday Oct 03, 2023

#SyngapCensus, #UFDCure Cannonball, Scramble, PRAX-222 & ciitizen, and a #mustread — #S10e118

Tuesday Oct 03, 2023

#SyngapCensus

https://www.syngapresearchfund.org/post/syngapcensus-2023-update-59-in-q3-2023-total-1-297

#UFDCure Cannonball - October 4-6

https://www.syngapresearchfund.org/cannonball

Effie on CBall https://effieparks.com/podcast/effisode-074-syngap-cannonball-for-a-cure

Pre-party https://x.com/UFDTech/status/1709366677261987862

Scramble - October 7, 2023

Stories https://www.syngapresearchfund.org/podcast-episodes/syngap1-stories-episode-019

Site

https://www.syngapresearchfund.org/families/scramble-for-syngap-syngap-research-fund

PRAX-222 & ciitizen

Marcio https://youtu.be/ibgINIFPFRk?si=Rtxe3rlTUWdMYGvg

Pressers

9/20 https://www.prnewswire.com/news-releases/invitaes-real-world-ciitizen-data-utilized-in-praxis-precision-medicines-prax-222-ind-filing-301627677.html

10/2 https://investors.praxismedicines.com/news-releases/news-release-details/praxis-precision-medicines-provides-portfolio-update-2023-rd-day

#mustread

Essay by Jennifer: https://effieparks.com/blog/2023/9/30/sometimes-there-is-no-silver-lining

Book: https://www.amazon.com/Self-Compassion-Proven-Power-Being-Yourself/dp/0061733520/

Wild Type Campaign

https://www.bonfire.com/wild-type-syngap1-1/

Conference - Sign up by Halloween - We need head counts.

Registration link: https://Syngap.Fund/Orlando

Hotels: https://Syngap.Fund/2023hotel

Shirts: https://www.bonfire.com/srf-syngap1-conference-2023/

Share your time and blood too!
Sign up for ciitizen!
Sign up for CHOP!

Volunteer!

Give us 5 stars everywhere. Like Apple podcasts: https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here - https://www.syngapresearchfund.org/syngap10-podcast

Episode 118 of #Syngap10 - October 3, 2023

#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat

Friday Sep 29, 2023

Plan on #RDW now, it’s been a banner week for high quality SYNGAP1 info - Cannonball is next week! — #S10e117

Friday Sep 29, 2023

CALLS TO ACTION

Plan on Rare on the Hill - Week of February 25th in DC

Watch #S10e96 https://www.youtube.com/watch?v=MkCKK4Z7J2I
Timeline https://everylifefoundation.org/rare-advocates/rare-disease-week-2023/rare-disease-week-agenda-2024/
Apply for support https://www.surveymonkey.com/r/CJPHMS9

Take this survey
1. Survey https://unmcmmi.co1.qualtrics.com/jfe/form/SV_bxObDOAeWxesIBM
2. Tweet https://x.com/PedsGCAbby/status/1706446478904811750

Great papers

Gastrointestinal Dysfunction in Genetically Defined Neurodevelopmental Disorders

https://x.com/cureSYNGAP1/status/1706770818703953955

Context-dependent hyperactivity in syngap1a and syngap1b #zebrafish #autism models

https://x.com/cureSYNGAP1/status/1706772916543893597

Sensorimotor Integration Supporting Perception Requires Syngap1 Expression in Cortex

https://x.com/cureSYNGAP1/status/1707475941348540894?s=20

We’re at 248 before the BioRxiv

https://x.com/cureSYNGAP1/status/1707516877558501652?s=20

Watch the Epic Stanfield Webinar - Behaviour, Cognition and Sensory Processing in People with SYNGAP1

https://www.syngapresearchfund.org/webinars/82-behaviour-cognition-and-sensory-processing-in-people-with-syngap1

Sign up for the next one

10/26 12PM ET Bryan Dickinson, PhD Webinar on Oligos that target translation to restore SYNGAP1 levels

https://www.syngapresearchfund.org/webinars/83-oligos-that-target-translation-to-restore-syngap1-levels

ILAE Interview on MAD https://www.ilae.org/journals/epigraph/epigraph-vol-25-issue-3-summer-2023/research-recap-modified-atkins-diet-and-health-related-quality-of-life-dr-magnhild-kverneland

More Recent Killer Content

Elle (Mickey) Sanderson Special Monthly Zoom Meeting on being an advocate; https://www.youtube.com/watch?v=B1sTsYAfaoA

Café SYNGAP1 dropped 2nd episode 9/27 with Juanita Polanco https://www.syngapresearchfund.org/cafe-syngap1-podcast/cafe-syngap1-episode-02 - next episode 10/5
Simons quarterly report (links to summary, full report, video to help understand charts). Sign up https://www.simonssearchlight.org/research/what-we-study/syngap1/

Upcoming Amazing Events

Cannonball starts Wednesday 10/4-10/6; Brett, Peter, Monica & Reece (works with Brett) $65,000 in giveaways! Live-stream link will be available soon https://www.syngapresearchfund.org/cannonball
Scramble 10/7 Julie Miles in Travelers Rest, SC; she is guest on SYNGAP1 Stories dropping Tues 10/3 - https://www.syngapresearchfund.org/families/scramble-for-syngap-syngap-research-fund; link to Stories - https://www.syngapresearchfund.org/syngap-stories
Park City Epilepsy Mtg 10/15 - 10/17; Mike & JR
10/18 - Mike keynote at The Enabling Patient Access to Health Data for Actionable Results virtual event by the Office of the National Coordinator for Health Information Technology (ONC) and Centers for Medicare and Medicaid Services (CMS)
Gala 10/21 https://www.syngapresearchfund.org/families/caren-leib-gala-syngap-research-fund

Conference - Sign up by Halloween - We need head counts.

- Registration link: https://Syngap.Fund/Orlando

- Hotels: https://Syngap.Fund/2023hotel

- Shirts: https://www.bonfire.com/srf-syngap1-conference-2023/

Share your time and blood too!
- Sign up for ciitizen!
- Sign up for CHOP!

- Volunteer!

- Give us 5 stars everywhere. Like Apple podcasts: https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here - https://www.syngapresearchfund.org/syngap10-podcast

Episode 117 of #Syngap10 - September 29, 2023

Monday Sep 18, 2023

Getting ready for Global Genes, Cannonball Scramble Gala & the SYNGAP1 Conference — #S10e116

Monday Sep 18, 2023

Congrats to…
- Allan Blake on his airborne fundraiser for SRF UK
- Aaron and Monica Harding on their Military Lifegiver Podcast (start at 7 minutes)
- Beacon on their FDA approval on the Sleep Headband Dream 3S
- Soiree 8/26 - $300K net raised by Suzanne

- Katrien on the ILAE #SYNGAP10 #S10e115

Webinar coming up:

Behaviour, Cognition and Sensory Processing in People with SYNGAP1

Sept 28 @ 9am PT/ 5pm GMT

Still a classic: Mike to FDA on SYNGAP1 For ORCA https://www.youtube.com/watch?v=AObE7NhSlmg&t=447s

Events to mention in SYNGAP10

- Global Genes, DEI - 9/18 - 9/23 - Vicky and Mike

- 2nd Scientific Conference in Spanish (virtual) 9/23
- Cannonball 10/4-10/6; Brett, Peter, Monica & Reece listen to Stories Episode 12 MH!

- Scramble 10/7 Julie Miles https://syngap.fund/scramble

- Park City Epilepsy Mtg 10/15 - 10/17; Mike, JR

- Gala 10/21 Nancy Kessler https://syngap.fund/CLG3

- Conference 11/30 & 12/1 + Sea World or Disney 12/2

Conference - Sign up by Halloween - We need head counts.

- Registration link: https://Syngap.Fund/Orlando

- Hotels: https://Syngap.Fund/2023hotel

- Shirts: https://www.bonfire.com/srf-syngap1-conference-2023/

Share your time and blood too!
- Sign up for ciitizen!
- Sign up for CHOP!

- Volunteer!

Donate to the biorepository in OH or IL:
- Sept 22, Liberty Township, OH: IRF2BPL Foundation (Home 2 Suites, 7145 Liberty Centre Drive, Liberty Township, OH 45069)

- Sept 29, Chicago, IL: KCNQ2 Cure Alliance Conference, September 29th 2023 (Hilton Hotel Chicago 300 E Ohio St, Chicago, IL 60611

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here

- https://www.syngapresearchfund.org/syngap10-podcast

Apple podcasts: https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917

Episode 116 of #Syngap10 - September 18, 2023

Sunday Sep 17, 2023

Katrien Deckers reflects on European 🇪🇺 Epilepsy Conference - #S10e115 (Volume up)

Sunday Sep 17, 2023

Katrien Deckers reflects on European 🇪🇺 Epilepsy Conference - #S10e115 (Volume up)

Katrien: https://www.syngapresearchfund.org/team/katrien-deckers-chairperson

Dr. Eschermann's Slides https://www.patre.info/2023/09/04/presentation-at-iec-2023/

EURAS Project Press Release https://euras-project.eu/

- Hotels ASAP: https://Syngap.Fund/2023hotel

- Merch https://www.bonfire.com/srf-syngap1-conference-2023/

Volunteer with SRF!

- https://www.syngapresearchfund.org/volunteer-with-syngap-research-fund

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10
- https://www.syngapresearchfund.org/syngap10-podcast

Apple podcasts:
- https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818

Episode 115 of #Syngap10 - September 17, 2023

Sunday Sep 10, 2023

Naya, Pods, ILAE, Warriors, Talking to Pharma, Monica H. is doing Cannonball! Another week in Syngap-land — #S10e114

Sunday Sep 10, 2023

Video - Thank you Alexis - https://youtu.be/xPbE0vg33eU - Dads in denial! Could be a good t-shirt.
Invitae story - https://blog.invitae.com/real-stories-naya-e-c37930c2e83

Pods - Review! Five stars!
- Channel :https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917
- S10: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1/id1560389818

- Stories: https://podcasts.apple.com/us/podcast/syngap1-stories/id1667705687

- Cafe SYNGAP1:: https://podcasts.apple.com/us/podcast/caf%C3%A9-syngap1/id1705809525

CHOP - Sign up! https://drive.google.com/file/d/1eCVGmQ5b3RfL0ZiMpjoWIgVpFaSfEVOh/view?usp=drivesdk

ILAE Dublin was a great success -
- Ana’s Tweet: https://twitter.com/CNSdrughunter/status/1699754342125847023
- Ana’s Webinar: https://www.syngapresearchfund.org/webinars/treatments-in-development-for-epilepsy-syndromes-opportunities-for-syngap1

Warriors - Sign up - https://www.syngapresearchfund.org/syngap-warrior/addison

Conference - Sign up by Halloween - We need head counts.

- Registration link: https://Syngap.Fund/Orlando

- Hotels ASAP: https://Syngap.Fund/2023hotel

- Shirts https://www.bonfire.com/srf-syngap1-conference-2023/

Presentations

- Pharma - To follow https://syngap.fund/23

- UCB-Digital Health - Agenda - https://med.stanford.edu/ucbcollaborative/events/2023-digital-health-symposium.html#agenda

- Sign up for Ciitizen. https://www.ciitizen.com/SYNGAP1/SRF/

- It matters, this data is bringing data to companies & making SYNGAP1 more attractive. SHARE YOUR DATA.

- If you have issues, email Virginie and Mequel.

CANNONBALL 3 is coming! October 4-6. Takeover coming soon.
- Monica is going on the road! https://www.syngapresearchfund.org/podcast-episodes/syngap1-stories-episode-012

Share your time and blood too!
Volunteer - https://www.syngapresearchfund.org/volunteer-with-syngap-research-fund

Donate to the biorepository in OH or IL:
- Sept 22, Liberty Township, OH: IRF2BPL Foundation (Home 2 Suites, 7145 Liberty Centre Drive, Liberty Township, OH 45069)

- Sept 29, Chicago, IL: KCNQ2 Cure Alliance Conference, September 29th 2023 (Hilton Hotel Chicago 300 E Ohio St, Chicago, IL 60611

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here

- https://www.syngapresearchfund.org/syngap10-podcast

Apple podcasts: https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917

Episode 114 of #Syngap10 - September 10, 2023

Saturday Sep 02, 2023

Fondo sets the bar for LatAm Engagement, Samar’s interview, Andrade’s paper, the 2nd Soiree was a hit, grants are rolling in! — #S10e113

Saturday Sep 02, 2023

Super Heroine: Vicky Arteaga

Fondo Syngap is tireless:

- 2 Congreso en Español on September 23, 2023

https://www.syngapresearchfund.org/professionals/2023-en-espanol

Spanish Podcast #CafeSyngap1e01

- YouTube https://www.youtube.com/watch?v=dh0lPuLLUFg

- Google https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9lNjAyMDgwMC9wb2RjYXN0L3Jzcw

- Spotify https://spotify.link/MJZZVMoKGCb

- Amazon Music https://music.amazon.com/podcasts/6e65b878-4506-4882-b6cd-1ea873c0ba7e/caf%C3%A9-syngap1

#FondoSYNGAP

SRF is at ILAE

- Let’s thank Katrien Deckers & Olga for representing SRF at ILAE in Dublin Sep 2nd - 6

- Vicky on one of the panels on Saturday called: Clinical diagnostic challenges in the genetic epilepsies and opportunities for precision treatment

Super Heroine: Ashley Frye with Suzanne Jones and Samar Katnani

#SyngapStories #KETO #MAD

- Samar Interview https://twitter.com/cureSYNGAP1/status/1693987401952342442?s=20

- Keto works, remember this old gem? https://www.syngapresearchfund.org/post/ketogenic-diet

Where have I been all week?

- Syngap Stories about Tony https://www.syngapresearchfund.org/podcast-episodes/syngap1-stories-episode-016

Soiree was AMAZING
- Tweet https://twitter.com/curesyngap1/status/1696595956467183904
- Ashley’s Speech https://www.youtube.com/watch?v=qw2mG3wTjfc

Super Heroine: Sydney Stelmazek

- CHOP Update

- 16 seen so far

- 27 signed up

- QEEG is SYNGAP1 compatible https://twitter.com/phalliburton/status/1694845802336641315?s=20

CANNONBALL 3 is coming! October 4-6.

Super Heroine: Dr. Danielle Andrade

Huge thanks to Dr. Andrade for this paper on Adults with SYNGAP1 https://twitter.com/DrDaniAndrade/status/1694717693080092976?s=20

Proposals came in today, we need to raise money!
Finally, we have at least 6 grant proposals received! Donate and Fundraise! https://www.syngapresearchfund.org/donate/donate

Share you time and blood too!
Volunteer - https://www.syngapresearchfund.org/volunteer-with-syngap-research-fund

Donate to the biorepository in OH or IL:
- Sept 22, Liberty Township, OH: IRF2BPL Foundation (Home 2 Suites, 7145 Liberty Centre Drive, Liberty Township, OH 45069)

- Sept 29, Chicago, IL: KCNQ2 Cure Alliance Conference, September 29th 2023 (Hilton Hotel Chicago 300 E Ohio St, Chicago, IL 60611

CONFERENCE

Registration link: https://Syngap.Fund/Orlando

Hotels ASAP: https://Syngap.Fund/2023hotel

Shirts https://www.bonfire.com/srf-syngap1-conference-2023/

Volunteer with SRF! Info@SyngapResearchFund.org

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here

- https://www.syngapresearchfund.org/syngap10-podcast

Apple podcasts:

https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818

Episode 113 of #Syngap10 - September 2, 2023

Friday Aug 18, 2023

Stanford Grant, CSC, UCSF Study, SYNGAP1 Case Report, Conference - #s10e112

Friday Aug 18, 2023

Congratulations to Dr. Knowles, read our press release.

https://www.syngapresearchfund.org/post/syngap-research-fund-srf-awards-130-000-grant-to-advance-research-on-maladaptive-myelination-syngap1-related-epilepsy

Check out the CSC Clinic at Stanford

https://www.syngapresearchfund.org/post/srf-announces-stanford-launches-california-synaptopathy-clinic-syngap1

Don’t miss #S10e111 to learn about Dr. Helbig

https://www.youtube.com/watch?v=i6EZUrqsn2g

In you are coming to or near SF, please go to the Willsey Lab and do the breathing test with your SYNGAPian

https://www.syngapresearchfund.org/post/very-easy-non-invasive-irb-approved-study-open-to-all-syngap1-patients-available-at-ucsf

Congratulations to Dr. Kadam for the SRF supported Case Study

Publication: https://www.frontiersin.org/articles/10.3389/fneur.2023.1221161/full

Tweet: https://twitter.com/cureSYNGAP1/status/1692227117126439099

- Hotels ASAP: https://Syngap.Fund/2023hotel

- Merch https://www.bonfire.com/srf-syngap1-conference-2023/

Volunteer with SRF!

- https://www.syngapresearchfund.org/volunteer-with-syngap-research-fund

Episode 112 of #Syngap10 - August 18, 2023

Saturday Aug 12, 2023

So much news, double catch up episode. #S10e111

Saturday Aug 12, 2023

*Note, we aware part of the video froze; that’s life!

RESEARCH!

- Dr. Helbig gave a killer presentation today… at Stanford. It was so cool to see SYNGAP1 mentioned. “Deciphering the Epilepsy Phenome – Understanding Longitudinal disease trajectories and outcomes” it showed how much data you can get form EHRs, ciitizen and NHS. We need them all. Sign up for Ciitizen! https://www.ciitizen.com/SYNGAP1/

- SRF Supported work out of Huganir’s Lab is on BioRx! https://www.biorxiv.org/content/10.1101/2023.08.06.552111v1.full.pdf

- Grants due on 9/1, already seeing good stuff. https://www.syngapresearchfund.org/professionals/grants/how-to-apply

VOLUNTEER SITE IS UP

- https://www.syngapresearchfund.org/volunteer-with-syngap-research-fund

WEBINARS ARE A VALUABLE RESOURCE

- https://www.syngapresearchfund.org/families/resources/all-webinars/webinars

- Yesterday, Dr. Underbakk, Previously with Dr. Courtney

NPR ARTICLE INCLUDING JACKIE KANCIR - https://wpln.org/post/episodes/the-cost-of-care-for-disabilities-and-chronic-illness

SYNGAP STORIES
Ashley Frye is killing it. Suzanne Jones just did an episode. The CHOP team listens, so do clinicians. Call Ashley and share your story.

COMPANY UPDATES

- Stoke had great news - https://investor.stoketherapeutics.com/news-releases/news-release-details/stoke-therapeutics-reports-second-quarter-financial-results-2

- Praxis also having good results - https://investors.praxismedicines.com/news-releases/news-release-details/praxis-precision-medicines-provides-corporate-update-and-9

- Have not heard from RegEl or Ionis.

EVENTS

- Getting ready for the Soiree - August 26th.

- Cannonball set for October 4-6

- SRF SYNGAP1 CONFERENCE

- Register, book etc. https://www.syngapresearchfund.org/professionals/syngap1-roundtable-2023-syngap-research-fund

- Watch #s10e109 https://youtu.be/to8SAwdzCmg

BIOMARKERS NEED BIOSAMPLES AND EEGS

- Combined Brain collections are great Dr. TJB met our very own Pavel this weekend! Plasma, plasma, plasma.

- UCLA Study is moving forward for EEG collection. Contact Declan via study page.

Upcoming times and places to do biosamples, thanks you Corey we are at 18 Syngapians and 21 Siblings. KEEP GOING

- GLUT1 Deficiency, August 26th, 9am-5pm (Embassy Suites, 13700 Conference Center Drive South, Noblesville, IN 46060)

- IRF2BPL Foundation, Sept 22nd-23rd 2023 (Home 2 Suites by Hilton, 7145 Liberty Centre Drive, Liberty Township, OH 45069, 513-644-2207)

- KCNQ2 Cure Alliance Conference, Sept 29th-30th 2023 (Hilton Hotel Chicago 300 E Ohio St, Chicago, IL 60611)

- NARS1 Conference, October 1st, 9am-5pm (13550 Commerce Blvd Rogers, MN 55374)

- Prader-Willi Syndrome/USP7 Foundation, October 5-7 (1672 Lawrence St, Denver, CO 80202)

- TBRS Community, Oct 12th-14th 2023 (Morgan’s Wonderland, 5223 David Edwards Dr, San Antonio, TX 78233)

- COMBINEDBrain Meeting, Oct 15th-16th 2023 (Washington DC)

- FAM177A1, Oct 29th 2023, 9am-5pm (2737 77th Ave Se Suite 101 Mercer Island, WA 98040)

- ADNP Syndrome, Oct 30th-Nov 1st 2023 (Los Angeles, CA)

- SYNGAP1 Research Fund, Dec 1st-3rd 2023 (8978 International Drive Orlando, FL, 32819)

—---

CONFERENCE

Registration link: https://Syngap.Fund/Orlando

Hotels ASAP: https://Syngap.Fund/2023hotel

Shirts https://www.bonfire.com/srf-syngap1-conference-2023/

Volunteer with SRF! Info@SyngapResearchFund.org

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here

- https://www.syngapresearchfund.org/syngap10-podcast

Apple podcasts:

https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818

Episode 111 of #Syngap10 - August 12, 2023

Sunday Jul 30, 2023

Adam’s Camp is amazing & so are compression vests #S10e110

Sunday Jul 30, 2023

Adam's Camp: Get on the mailing list! https://adamscamp.org/

Tony’s Slides! https://docs.google.com/presentation/d/1RVJekxVN6Bemx78Boy7FRbUrtHKAVE0bBzRBlIpyEeA/edit?usp=sharing

Compression Clothing https://calmcare.com/

Come to the conference https://www.youtube.com/watch?v=to8SAwdzCmg

—

CONFERENCE

Registration link: https://Syngap.Fund/Orlando

Hotels ASAP: https://Syngap.Fund/2023hotel

Shirts https://www.bonfire.com/srf-syngap1-conference-2023/

Volunteer with SRF! Info@SyngapResearchFund.org

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here

- https://www.syngapresearchfund.org/syngap10-podcast

Apple podcasts:

https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818

Episode 110 of #Syngap10 - July 31, 2023

Thursday Jul 20, 2023

FAQs for SRF’s SYNGAP1 Conference 2023 #SYNGAP1 #SRFconference #Orlando #S10e109

Thursday Jul 20, 2023

Guest Hosts: Ashley Frye & Lauren Perry

THE BASICS

Who: Everyone! Families (including extended), caregivers, scientists, industry reps.

What: SRF’s 2nd Annual SYNGAP1 Conference.

- Registration link: Syngap.Fund/2023ConfReg

Where: Orlando, FLORIDA! Embassy Suites by Hilton Orlando International Drive Convention Center.

- Room block: https://Syngap.Fund/2023hotel

When: Thursday, November 30th and Friday, December 1st, 2023. *Sea World outing is the Saturday following the conference. More to come on that.

Why: Once in a year opportunity to be in the same room with multiple Syngap families from not only around the US but around the world!

T-SHIRTS: https://www.bonfire.com/srf-syngap1-conference-2023/

—

Volunteer with SRF! Info@SyngapResearchFund.org

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here

- https://www.syngapresearchfund.org/syngap10-podcast

Apple podcasts:

https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818

Episode 109 of #Syngap10 - July 20, 2023