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! [email protected] 

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

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

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

Episode 109 of #Syngap10 - July 20, 2023

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

Happy 5th Birthday SRF! https://mailchi.mp/syngapresearchfund.org/happy-5th-birthday-srf 

FASTERCURES

See #S10e98 https://www.youtube.com/watch?v=iOLjUdVUtqo 

https://milkeninstitute.org/centers/fastercures/building-nonprofit-capacity/train 

Census https://Syngap.fund/census - 1,238

CHOP

McKee Grant via AES https://twitter.com/jillianlmckee/status/1674037974684647424?s=46&t=8Y3-Ue9XY-QOTy42vH52Fw 

NHS Blog - https://www.syngapresearchfund.org/post/natural-history-study-at-childrens-hospital-of-philadelphia-is-a-natural-win-for-srf 

What to expect - https://www.syngapresearchfund.org/post/what-to-expect-when-youre-preparing-to-visit-the-syngap1-natural-history-study 

Their reflections: http://epilepsygenetics.net/2023/07/11/stxbp1-and-syngap1-natural-history-reflections-after-day-1-of-endd-clinic/

STUDIES

See #S10e107 for four opportunities, https://www.youtube.com/watch?v=boHYLi3S-Mk 

But also: UCLA - EEG - West Coast!

Missense, let’s make cell lines… watch this: https://www.syngapresearchfund.org/webinars/79-quantifying-perturbed-syngap1-function-caused-by-coding-mutations/ 

PODCASTS

Brain and Life 1 and 2

https://www.brainandlife.org/articles/after-their-children-were-diagnosed-with 

Part 1 - English - https://www.brainandlife.org/podcast/community-stories-navigating-rare-epilepsy-diagnosis 

Part 2 - Spanish - https://www.brainandlife.org/podcast/comunidad-sobre-como-afrontar-diagnostico-epilepsia-genetica 

Podcasts - Syngap1 Stories - Ashley Evans (11) and Monica Harding (12)

Ashley - https://www.syngapresearchfund.org/podcast-episodes/syngap1-stories-episode-011

Monica - https://www.syngapresearchfund.org/podcast-episodes/syngap1-stories-episode-012

CONFERENCE 

Pre-registration link: https://Syngap.Fund/2023conf  

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

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

All this was in today’s newsletter! https://Syngap.Fund/News33 

Ed is doing a great job with these, thank you Ed!

Volunteer with SRF! [email protected] 

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

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

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

Episode 108 of #Syngap10 - July 13, 2023

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

Happy 5th Birthday SRF! https://mailchi.mp/syngapresearchfund.org/happy-5th-birthday-srf 

FASTERCURES

See #S10e98 https://www.youtube.com/watch?v=iOLjUdVUtqo 

https://milkeninstitute.org/centers/fastercures/building-nonprofit-capacity/train 

Census https://Syngap.fund/census - 1,238

CHOP

McKee Grant via AES https://twitter.com/jillianlmckee/status/1674037974684647424?s=46&t=8Y3-Ue9XY-QOTy42vH52Fw 

NHS Blog - https://www.syngapresearchfund.org/post/natural-history-study-at-childrens-hospital-of-philadelphia-is-a-natural-win-for-srf 

What to expect - https://www.syngapresearchfund.org/post/what-to-expect-when-youre-preparing-to-visit-the-syngap1-natural-history-study 

Their reflections: http://epilepsygenetics.net/2023/07/11/stxbp1-and-syngap1-natural-history-reflections-after-day-1-of-endd-clinic/

STUDIES

See #S10e107 for four opportunities, https://www.youtube.com/watch?v=boHYLi3S-Mk 

But also: UCLA - EEG - West Coast!

Missense, let’s make cell lines… watch this: https://www.syngapresearchfund.org/webinars/79-quantifying-perturbed-syngap1-function-caused-by-coding-mutations/ 

PODCASTS

Brain and Life 1 and 2

https://www.brainandlife.org/articles/after-their-children-were-diagnosed-with 

Part 1 - English - https://www.brainandlife.org/podcast/community-stories-navigating-rare-epilepsy-diagnosis 

Part 2 - Spanish - https://www.brainandlife.org/podcast/comunidad-sobre-como-afrontar-diagnostico-epilepsia-genetica 

Podcasts - Syngap1 Stories - Ashley Evans (11) and Monica Harding (12)

Ashley - https://www.syngapresearchfund.org/podcast-episodes/syngap1-stories-episode-011

Monica - https://www.syngapresearchfund.org/podcast-episodes/syngap1-stories-episode-012

CONFERENCE 

Pre-registration link: https://Syngap.Fund/2023conf  

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

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

All this was in today’s newsletter! https://Syngap.Fund/News33 

Ed is doing a great job with these, thank you Ed!

Volunteer with SRF! [email protected] 

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 108 of #Syngap10 - July 13, 2023

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

Inspiring Events, Family Video & Important Studies. *Note the CINEMAS TRIAL for Epidiolex - #S10e107

RECENT EVENTS

MDBR Blog https://www.syngapresearchfund.org/post/mdbr-2023-everything-we-want-to-c-happening-for-syngap1-camaraderie-community-collaboration

Paddle Slap video https://www.youtube.com/watch?v=F9SaHPzd5bU

Paddle Slap blog https://www.syngapresearchfund.org/post/syngap-paddle-slap-is-a-thing

Family Video and Fundraiser:

Shaeffer Video https://www.youtube.com/watch?v=Z_dI059yPeM

Shaeffer Fundraiser https://secure.givelively.org/donate/syngap-research-fund-incorporated/support-srf-for-story-s-19th-birthday

SRF in the World:

SRF in Mexico - Our Voice is Getting Louder blog Syngap.Fund/Voice

SRF in Poland - https://twitter.com/beatasyngap1/status/1664996361585197057?s=20

STUDIES

ENDD S1 NHS - Email [email protected] to sign up and please cc [email protected], [email protected] & [email protected] - https://drive.google.com/file/d/1ASUkKQOgjbs9hkJVCJ40N8MbVFH4X9_h/view#

CHOP NHS ENDD Blog: https://Syngap.Fund/CHOPNHS

CORNELL

English https://redcap.link/syngapcaregiversurvey

Spanish https://redcap.ctsc.weill.cornell.edu/redcap_protocols/surveys/?s=MWTW743PHENPPRPY

COMBINEDBrain Biorepository

https://www.syngapresearchfund.org/webinars/74-combinedbrain-biobank-our-partnership-with-srf-for-syngap1

• STXBP1 Foundation, (July 21st-23rd 2023; 10600 Westminster Blvd, Westminster, CO 80020)

CINEMAS STUDY - Mild Intellectual Delay

https://cinemasstudy.com/#right_for_me 

PRESS

Axios Fruit Flies article https://www.axios.com/local/salt-lake-city/2023/06/09/fruit-fly-medical-research-university-utah

FUTURE EVENTS

June 21 - Splash for Syngap https://www.syngapresearchfund.org/post/share-your-love-for-someone-with-syngap1-for-splash4syngap

August 26 - Syngap Soiree  https://e.givesmart.com/events/wiH

October 7 - Scramble for Syngap https://secure.givelively.org/event/syngap-research-fund-incorporated/scramble-for-syngap-2023

October 21 - SynGAP Research Fund Gala Honoring Caren Leib - https://e.givesmart.com/events/wBy/

October 30-31 - Epilepsy Awareness Day at Disneyland  https://epilepsyawarenessday.org/lobby-page/

Nov 30-Dec 1 - SYNGAP1 Conference 2023 hosted by SynGAP Research Fund https://www.syngapresearchfund.org/professionals/syngap1-roundtable-2023-syngap-research-fund

Conference pre-registration link: Syngap.Fund/2023conf

Book hotels ASAP: https://Syngap.Fund/2023hotel

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

WEBINARS

Upcoming: June 15 - Quantifying perturbed SYNGAP1 Function Caused by Coding Mutations - Dr. Michael Courtney from Turku in Finland https://www.syngapresearchfund.org/webinars/79-quantifying-perturbed-syngap1-function-caused-by-coding-mutations

- Previous: Therapeutic Strategies for Autism: Targeting Three Levels of the Central Dogma of Molecular Biology - Presented to the SYNGAP1 Community - Lilia Iakoucheva & Derek Hong https://www.syngapresearchfund.org/webinars/78-therapeutic-strategies-for-autism-targeting[…]tral-dogma-of-molecular-biology-with-a-focus-on-syngap1

PODCAST

- Syngap Stories, interviews, see #10 with Dani Williams  https://www.syngapresearchfund.org/podcast-episodes/episode-010

Volunteer with SRF! [email protected] 

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

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

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

Episode 107 of #Syngap10 - June 14, 2023

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

Blane & Ashley Dallen & Melissa Oakley in Canada just raised over $10k together with two events.

SynGAP Paddle Slap

Stats: They had 12 teams play in the tournament.  About 120 people joined the crawfish boil.  Actual $ breakdown: Total Actual Income $23,250.00.

Article https://www.localmemphis.com/article/life/family/rare-disease-research-promoted-integra[…]1-austim-epilepsy/522-b805046b-d05e-4f17-a8ab-69421293f926 

Minnie's article in the Chicago Tribune. (behind firewall) https://www.chicagotribune.com/people/health/ct-hayden-cheng-syngap-diagnosis-0525-20230527-zacxfmtrhbd4bm5gbc3su5hsr4-story.html 

Vicky & Paulina in Chihuahua, Mexico at Sociedad Mexicana de Neurología Pediátrica's annual conference https://twitter.com/cureSYNGAP1/status/1659250923611496449 

Two blogs en Español

https://www.syngapresearchfund.org/post/vacacionar-con-un-syngap1-147 

https://www.syngapresearchfund.org/post/notas-de-terliz-mama-syngap1-145 

STUDIES

ENDD S1 NHS - Email [email protected] to sign up and please cc [email protected], [email protected] & [email protected] https://drive.google.com/file/d/1ASUkKQOgjbs9hkJVCJ40N8MbVFH4X9_h/view# 

Watch #S10e105 https://www.youtube.com/watch?v=qy5YrPIlH0I 

Cornell study

English https://redcap.link/syngapcaregiversurvey 

Spanish https://redcap.ctsc.weill.cornell.edu/redcap_protocols/surveys/?s=MWTW743PHENPPRPY 

COMBINEDBrain Biorepository - https://www.syngapresearchfund.org/webinars/74-combinedbrain-biobank-our-partnership-with-srf-for-syngap1 

SCIENCE

1st Syngap Patient Derived Models from SRF grant to Dr. Araki & Dr. Huganir https://www.biorxiv.org/content/10.1101/2023.05.25.542312v2 

"Eye of the Fly" Chow article - https://www.ksl.com/article/50638506/eye-of-the-fly-how-fruit-flies-could-help-find-treatment-for-a-rare-genetic-disease 

EVENTS

June 10 - MDBR https://charity.pledgeit.org/t/Optdm6sOX9 

June 21 - Splash for Syngap https://www.syngapresearchfund.org/post/share-your-love-for-someone-with-syngap1-for-splash4syngap 

August 26 - Syngap Soiree  https://e.givesmart.com/events/wiH 

October 7 - Scramble for Syngap https://secure.givelively.org/event/syngap-research-fund-incorporated/scramble-for-syngap-2023 

October 21 - SynGAP Research Fund Gala Honoring Caren Leib - https://e.givesmart.com/events/wBy/ 

CONFERENCE

Nov 30-Dec 1 - SYNGAP1 Conference 2023 hosted by SRF https://www.syngapresearchfund.org/professionals/syngap1-roundtable-2023-syngap-research-fund 

Conference pre-registration link: https://Syngap.Fund/2023conf 

Book hotels ASAP: https://Syngap.Fund/2023hotel

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

WEBINARS

June 8 - Therapeutic strategies for autism: Targeting Three levels of the central dogma of molecular biology - Dr. Lilia Iakoucheva & Mr. Derek Hong https://www.syngapresearchfund.org/webinars/78-therapeutic-strategies-for-autism-targeting[…]tral-dogma-of-molecular-biology-with-a-focus-on-syngap1 

June 15 - Quantifying perturbed SYNGAP1 Function Caused by Coding Mutations - Dr. Michael Courtney from Turku in Finland https://www.syngapresearchfund.org/webinars/79-quantifying-perturbed-syngap1-function-caused-by-coding-mutations 

PODS

- Syngap Stories, interviews, see #8 with Heather Bensch https://www.syngapresearchfund.org/podcast-episodes/syngap1-stories-episode-008 

- Syngap Stories, interviews, see #9 with Lauren Perry https://www.syngapresearchfund.org/podcast-episodes/syngap1-stories-episode-009 

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 106 of #Syngap10 - June 6, 2023

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

Blane & Ashley Dallen & Melissa Oakley in Canada just raised over $10k together with two events.

SynGAP Paddle Slap *this woman knows how to run a successful fundraising event with very low overhead!

Stats: They had 12 teams play in the tournament.  About 120 people joined the crawfish boil.  Actual $ breakdown: Total Actual Income $23,250.00.

Article https://www.localmemphis.com/article/life/family/rare-disease-research-promoted-integra[…]1-austim-epilepsy/522-b805046b-d05e-4f17-a8ab-69421293f926 

Minnie's article in the Chicago Tribune. (behind firewall) https://www.chicagotribune.com/people/health/ct-hayden-cheng-syngap-diagnosis-0525-20230527-zacxfmtrhbd4bm5gbc3su5hsr4-story.html 

Vicky & Paulina in Chihuahua, Mexico at Sociedad Mexicana de Neurología Pediátrica's annual conference https://twitter.com/cureSYNGAP1/status/1659250923611496449 

Two blogs en Español

https://www.syngapresearchfund.org/post/vacacionar-con-un-syngap1-147 

https://www.syngapresearchfund.org/post/notas-de-terliz-mama-syngap1-145 

STUDIES

ENDD S1 NHS - Email [email protected] to sign up and please cc [email protected], [email protected] & [email protected] https://drive.google.com/file/d/1ASUkKQOgjbs9hkJVCJ40N8MbVFH4X9_h/view# 

Watch #S10e105 https://www.youtube.com/watch?v=qy5YrPIlH0I 

Cornell study

English https://redcap.link/syngapcaregiversurvey 

Spanish https://redcap.ctsc.weill.cornell.edu/redcap_protocols/surveys/?s=MWTW743PHENPPRPY 

COMBINEDBrain Biorepository - https://www.syngapresearchfund.org/webinars/74-combinedbrain-biobank-our-partnership-with-srf-for-syngap1 

SCIENCE

1st Syngap Patient Derived Models from SRF grant to Dr. Araki & Dr. Huganir https://www.biorxiv.org/content/10.1101/2023.05.25.542312v2 

"Eye of the Fly" Chow article - https://www.ksl.com/article/50638506/eye-of-the-fly-how-fruit-flies-could-help-find-treatment-for-a-rare-genetic-disease 

EVENTS

June 10 - MDBR https://charity.pledgeit.org/t/Optdm6sOX9 

June 21 - Splash for Syngap https://www.syngapresearchfund.org/post/share-your-love-for-someone-with-syngap1-for-splash4syngap 

August 26 - Syngap Soiree  https://e.givesmart.com/events/wiH 

October 7 - Scramble for Syngap https://secure.givelively.org/event/syngap-research-fund-incorporated/scramble-for-syngap-2023 

October 21 - SynGAP Research Fund Gala Honoring Caren Leib - https://e.givesmart.com/events/wBy/ 

CONFERENCE

Nov 30-Dec 1 - SYNGAP1 Conference 2023 hosted by SynGAP Research Fund https://www.syngapresearchfund.org/professionals/syngap1-roundtable-2023-syngap-research-fund 

Conference pre-registration link: https://Syngap.Fund/2023conf 

Book hotels ASAP: https://Syngap.Fund/2023hotel

WEBINARS

June 8 - Therapeutic strategies for autism: Targeting Three levels of the central dogma of molecular biology - Dr. Lilia Iakoucheva & Mr. Derek Hong https://www.syngapresearchfund.org/webinars/78-therapeutic-strategies-for-autism-targeting[…]tral-dogma-of-molecular-biology-with-a-focus-on-syngap1 

June 15 - Quantifying perturbed SYNGAP1 Function Caused by Coding Mutations - Dr. Michael Courtney from Turku in Finland https://www.syngapresearchfund.org/webinars/79-quantifying-perturbed-syngap1-function-caused-by-coding-mutations 

Recently  - Dr. Baptiste Lacoste - Involvement of the brain endothelium in neurodevelopmental disorders https://www.syngapresearchfund.org/webinars/76-involvement-of-the-brain-endothelium-in-neurodevelopmental-disorders-syngap1 

- Syngap Stories, interviews, see #8 with Heather Bensch https://www.syngapresearchfund.org/podcast-episodes/syngap1-stories-episode-008 

- Syngap Stories, interviews, see #9 with Lauren Perry https://www.syngapresearchfund.org/podcast-episodes/syngap1-stories-episode-009 

Volunteer with SRF! [email protected] 

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

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

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

Episode 106 of #Syngap10 - June 6, 2023

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

Email [email protected] to sign up, please cc [email protected]

Email [email protected] to sign up, please cc [email protected]

Email [email protected] to sign up, please cc [email protected]

Email [email protected] to sign up, please cc [email protected]

Email [email protected] to sign up, please cc [email protected]

This is the ENDD of excuses.  Sign up for the CHOP ENDD Study.

There is so much work to do, volunteer [email protected] 

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

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

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

Episode 105 of #Syngap10 - May 19, 2023

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

Email [email protected] to sign up, please cc [email protected]

Email [email protected] to sign up, please cc [email protected]

Email [email protected] to sign up, please cc [email protected]

Email [email protected] to sign up, please cc [email protected]

Email [email protected] to sign up, please cc [email protected]

This is the ENDD of excuses.  Sign up for the CHOP ENDD Study.

There is so much work to do, volunteer [email protected] 

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 105 of #Syngap10 - May 19, 2023

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

Long trip, but first…

Last Episode (#S10e103 https://www.youtube.com/watch?v=Tpz-8Uf6qcU) special thanks to Lauren Perry for doing this and for the detailed review. We missed on fabulous family also had an event$243,794 of $250,000, 849 Donors <- https://syngap.fund/sprint23 

Phoebe was just diagnosed this year, so it was our first year participating in Sprint4Syngap. We had over 75 family, friends, neighbors, and supporters attend our event in DC. 

Stoke - Earnings and steady progress.

“This morning we reported Q1 financial results and provided a few business updates. Stoke is on-track to report new data from the ongoing Phase 1/2a clinical studies of STK-001 in children and adolescents with Dravet syndrome in mid-2023. The data readout will focus on safety and seizure frequency results for up to 16 patients who received three doses of 45mg of STK-001 and there are plans to initiate a pivotal study in 2024, pending this additional data.  Also, as we recently shared, Stoke received authorization to initiate a Phase 1/2 study in the UK of STK-002, an investigational new treatment for Autosomal Dominant Optic Atrophy (ADOA).”

Deck: https://investor.stoketherapeutics.com/static-files/40ff9e8c-9554-4164-911e-4438676d9001

$ 254.2M as of 3/31/23 (because of Acadia deal)

Webinars - https://syngap.fund/webinar 

- McKee is up and a must watch - such tremendous data (Sign up for ciitizen, https://ciitizen.com/syngap1)

- Smith 5/11 - Catatonia in Neurodevelopmental Conditions https://syngap.fund/smith 

- Lacoste 5/18 - Involvement of the brain endothelium in neurodevelopmental disorders https://syngap.fund/lacoste 

Podcasts

- Syngap Stories, interviews, see #7 with Peter Halliburton https://www.syngapresearchfund.org/syngap-stories

- OUAG with Janie Reade #184 https://effieparks.com/podcast/episode-184-more-of-everything 

#BrainDonationAwarenssDay

- https://www.syngapresearchfund.org/post/syngap-research-fund-srf-partners-with-autism-brainnet

- https://www.syngapresearchfund.org/webinars/an-introduction-to-autism-brainnet 

- https://twitter.com/cureSYNGAP1/status/1655180930644951041 

Red-eye! Congrats to Chow Lab for SYNGAP1 Press

- https://www.ksl.com/article/50638506/eye-of-the-fly-how-fruit-flies-could-help-find-treatment-for-a-rare-genetic-disease- 

Paper Alert! #ASO

- Prosser on ASO - https://threadreaderapp.com/thread/1655611277232967681.html 

Big trip

- Boot Camp - https://twitter.com/JMGraglia/status/1652026502899445760

- CHOP - More in Next Episode (#S10e105) Sydney & Yulia https://twitter.com/JMGraglia/status/1653479046905249820

- RDDS - GG with Yulia - https://twitter.com/GlobalGenes/status/1653415768317370373

- St. Jude with Kevin - https://twitter.com/JMGraglia/status/1654560540541288448

RIP Marie

- https://www.facebook.com/mike.graglia/posts/pfbid02iuj7TmQ5P8EedhSBtqtC8wcxrzBp2RyEYPb3nzeLW6jXgmvFFSEpNXSbmChTJBzCl 

#MDBRSRF - 32 days - June 10, 2023

syngap.fund/mdbr23

#SyngapConf - 205 days - book now, November 30, 2023

- Conf pre-registration link: Syngap.Fund/2023conf - Book hotels ASAP: https://syngap.fund/2023hotel 

Remember the Biorepository Roadshow - https://syngap.fund/roadshow 

List of biorepository collection opportunities, watch this webinar for more information see https://syngap.fund/TJB 

- DYRK1A Foundation, June 23rd-25th 2023 (Bethesda, MD)

.......

- SYNGAP1 Research Fund, Dec 1st-3rd 2023 (Orlando, FL)

There is so much work to do, volunteer [email protected] 

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 104 of #Syngap10 - May 9, 2023

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

Long trip, but first…

Last Episode (#S10e103 https://www.youtube.com/watch?v=Tpz-8Uf6qcU) special thanks to Lauren Perry for doing this and for the detailed review. We missed on fabulous family also had an event