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PODCAST

CURE SYNGAP1 Podcast

Mike Graglia, CURE SYNGAP1

The CURE SYNGAP1 Podcast is a weekly blog to keep parents and families up to date on what the team at CURE SYNGAP1 is doing to advocate for patients and advance research into SYNGAP1. If you do nothing else, listen to or watch this and let us know what you think. There are over 1,675 diagnosed patients on earth according to SRF"s #SyngapCensus. If you are related to one of those patients or are a researcher or clinician interested in SYNGAP1, this podcast is for you. Learn more at

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All Episodes

00:23:49

So much news, double catch up episode. #S10e111

CURE SYNGAP1 Podcast ·

2023/08/12

*Note, we are 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

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00:09:07

Adam’s Camp is amazing & so are compression vests...

CURE SYNGAP1 Podcast ·

2023/07/31

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

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00:14:00

FAQs for SRF’s SYNGAP1 Conference 2023 ⁠#SYNGAP1⁠⁠...

CURE SYNGAP1 Podcast ·

2023/07/20

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

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00:17:39

Happy Birthday SRF! Five years of making the future...

CURE SYNGAP1 Podcast ·

2023/07/14

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 -

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00:08:39

Inspiring Events, Family Video & Important Studies....

CURE SYNGAP1 Podcast ·

2023/06/14

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

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00:19:47

THREE studies to join, animal models to celebrate,...

CURE SYNGAP1 Podcast ·

2023/06/06

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)

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00:15:17

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

CURE SYNGAP1 Podcast ·

2023/05/19

Email ENDD@chop.edu to sign up, please cc mike@curesyngap1.org Email ENDD@chop.edu to sign up, please cc mike@curesyngap1.org Email ENDD@chop.edu to sign up, please cc mike@curesyngap1.org Email ENDD@chop.edu to sign up, please cc mike@curesyngap1.org Email ENDD@chop.edu to sign up, please cc mike@curesyngap1.org This is the ENDD of excuses. Sign up for the CHOP ENDD Study. There is so much work to do, volunteer Info@SyngapResearchFund.org This is a podcast: subscribe to and rate this 10 minute

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00:21:48

Connection for Science - #S10e104

CURE SYNGAP1 Podcast ·

2023/05/10

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

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00:10:04

All About #Sprint4Syngap 2023! #S10e103

CURE SYNGAP1 Podcast ·

2023/05/04

Grand Total: $241,359 – Incredible! Congratulations to all the teams. In-Person Events: Team Tavilla raised $162,464…and counting Hope for Hadley raised $10,059… and counting Team Syngap America Latina raised over $2,000 Canada - Team Mya raised over $2800 & Team Chase raised over $2300 Team Andrew raised over $3,200 Team Emma Mae raised over $3,000 Team Kai raised over $2,600 Team Gracyn raised $1,864 Team Naya raised $1,795 Team Patrick raised $1,240 Kilometers4Kai raised

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00:13:03

McKee Data Webinar on Thursday! #SPRINT4SYNGAP in 4...

CURE SYNGAP1 Podcast ·

2023/04/26

Webinars McKEE 4/27 https://syngap.fund/mckee - Ciitizen SYNGAP1 count is over 212 - Sign-UP https://ciitizen.com/syngap1 - Sign-IN & Update https://app.ciitizen.com/ SMITH 5/11 https://syngap.fund/smith LACOSTE 5/18 https://syngap.fund/lacoste #Sprint4Syngap - 4 days, April 29, 2023 - $210k, 652 donors. - https://syngap.fund/sprint - Fundraising page: https://syngap.fund/sprint23 What’s your neuro emergency

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00:20:54

SRF Supported Publication on NET, Siblings, Webinars,...

CURE SYNGAP1 Podcast ·

2023/04/15

What’s your neuro emergency plan?https://twitter.com/cureSYNGAP1/status/1646170843503034368 Congrats to Dr. Frazier on the FIRST NET paper: https://twitter.com/cureSYNGAP1/status/1646573476353044481 Thanks to Kevin for going to Gatlinburg - Kevin https://twitter.com/cureSYNGAP1/status/1646530060227346433 - ORCA https://twitter.com/cureSYNGAP1/status/1646212570649604097 Thanks to Brain & Life, part of AAN for this article "How Parents Advocate for Their Children with Rare Diseases”

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00:13:55

💯Episode 100! Survey, GI, Biorepository, Press, PG,...

CURE SYNGAP1 Podcast ·

2023/04/09

How is the podcast doing? - Episode 1 - 93 in ciitizen, 750 patients, on our first Sprint… https://youtu.be/aGDEc8Uwy-k - Episode 100 - 212 in ciitizen, 1,215 patients, on our 3rd Sprint! What you can do this week? - Take the education survey https://forms.gle/YZJZmJavMNKNEBg88 and consider joining our advocacy group. - Tell me if you have any GI biopsies planned. - Plan your travel - Biorepository Roadshow - See end of shownotes or

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00:14:41

🌞🐒🐸SYNGAP1 is HOT: Gene Therapies, Monkey, Combined...

CURE SYNGAP1 Podcast ·

2023/04/01

Watch the COMMBINEDbrain / TJB Webinar! https://www.syngapresearchfund.org/webinars/74-combinedbrain-biobank-our-partnership-with-srf-for-syngap1 Frogs are cool https://www.spectrumnews.org/news/profiles/how-helen-willsey-broke-new-ground-frogs-in-hand/ See Figure 2D https://pubmed.ncbi.nlm.nih.gov/33497602/ #SYNGAPcensus is at 1,251 https://www.syngapresearchfund.org/post/142-syngapcensus-2023-update-51-in-q1-2023 SYNGAP is HOT https://www.youtube.com/watch?v=X4iDyHc4xUA #Sprint4Syngap - 28

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00:12:57

Building the SYNGAP1 SRF House - using the Milken...

CURE SYNGAP1 Podcast ·

2023/03/24

Milken Fastercures RPMM - So much strong work and thinking here! https://milkeninstitute.org/centers/fastercures/train/toolkits/RPMM - Three floors: Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible. - St. Francis of Assisi - Cool Tweet: https://twitter.com/LindsayOkamoto/status/1639017493007335425?s=20 Why we need a house? www.fpwr.org - www.jdrf.org - www.runx1-fpd.org Press is key! Congrats to

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00:16:53

Talking to families with 2 year olds, 3 Webinars not...

CURE SYNGAP1 Podcast ·

2023/03/16

Community with families - Amazing time with the Hardings, thank you. https://www.facebook.com/monica.cruzharding/posts/pfbid02WPzjhp3jSMtetB2vHCvMDtyUzqFD2SdP6Ebi68XF8TZdqhvJoqMywVWASp4x8mVUl - Hattie and Tony at the pool with the Fosters - Foster movie link on website: https://www.syngapresearchfund.org/patient-stories/hattie/ - Foster press - 3/13/23 - KMBC News: https://www.kmbc.com/article/we-re-so-hopeful-local-girl-fighting-rare-disease/43279999/ - 2/28/23 - Fox4KC

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00:13:38

Rare Disease Day 2023 was epic and you should have...

CURE SYNGAP1 Podcast ·

2023/03/06

RD Advocacy with Everylife Foundation was Epic. - https://everylifefoundation.org/rare-advocates/rare-disease-week/ - Join us next year! Be in cool pictures like this - https://twitter.com/rareadvocates/status/1631421473842667520 - https://twitter.com/RareAdvocates/status/1631038634936741890 - Here were our asks: - https://everylifefoundation.org/wp-content/uploads/2023/02/ELF-FY24-Appropriations_One-Pager.pdf -

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00:18:57

Rare Disease Day 2023 - Hattie Video, Coller & McKee...

CURE SYNGAP1 Podcast ·

2023/02/28

It’s RARE DISEASE DAY! Hattie has a new video! https://www.syngapresearchfund.org/families/movies I’m off to DC for NIH Day and RD Advocacy with Everylife Foundation - https://ncats.nih.gov/news/events/rdd - https://everylifefoundation.org/rare-advocates/rare-disease-week/ We have a $20k match! - https://syngap.fund/rdd23 - https://secure.givelively.org/donate/syngap-research-fund-incorporated/srf-rare-disease-day-2023 Deadline for Grants is 3/1 -

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00:11:52

Time to fundraise for SYNGAP1 Research! Great info on...

CURE SYNGAP1 Podcast ·

2023/02/23

We have a $20k match! - https://syngap.fund/rdd23 - https://secure.givelively.org/donate/syngap-research-fund-incorporated/srf-rare-disease-day-2023 #Sprint4Syngap - https://syngap.fund/sprint23 - Main page https://secure.givelively.org/donate/syngap-research-fund-incorporated/sprint4syngap-2023 - 13 Teams! Four already raising funds: Team Tavilla, Team Naya, Hope4Hadley, Team Lizzy. Nine more ready to go. - Bonfire Shirts: https://www.bonfire.com/sprint-for-syngap-2023/ Amazing Webinars -

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00:20:23

More on ENDD gift at Penn, but first, Finding SYNGAP1...

CURE SYNGAP1 Podcast ·

2023/02/14

-Beacon - EEGs are critical for us. https://beacon.bio/ -Diagnosis: Heather - Survey: https://syngap.fund/maybe - Learn about this here: https://www.syngapresearchfund.org/post/probably-genetic-three-month-program-update - #CouldItBeSYNGAP1 - https://sparkforautism.org/ - #s10e91 - https://www.youtube.com/watch?v=JBQNGKiYQEE - OUAG - Testing Poem - Roses are red, Violets are blue You gave a diagnosis of #ASD, But that's not really true.

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00:15:58

10 Reasons SYNGAP-land is hopeful & exciting today...

CURE SYNGAP1 Podcast ·

2023/02/08

1. Last week RegEl announced that their CNS Pipeline: Dravet, SCN2A & SYNGAP1 - News https://twitter.com/cureSYNGAP1/status/1621293977579442177 - Follow her https://twitter.com/navneetkmatharu - And him https://www.linkedin.com/in/jordane-dimidschstein-a1114852 2. Yesterday, Penn announced a $25m grant to the ENDD Program which is a dream team. - Announcement: https://twitter.com/curesyngap1/status/1623000399300153344?s=46&t=GQBKtxA44lny0qsvNyEkAw - Prosser Webinar:

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