x

75% of people globally want unbiased news (Pew Research) but are concerned they're not getting that.

Get balanced coverage with Symby. See how stories are covered across diverse outlets and spot when one side covers a story the other skips.

PODCAST

CURE SYNGAP1 PODCAST aka SYNGAP10

Syngap Research Fund, 501(c)(3)

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

business non-profit

All Episodes

9:56

Comment on Haystack Petition to FDA. New Board of...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2026/04/21

Monday, April 20, 2026 - Week 17CURE SYNGAP1 joins the Haystack Project in petitioning FDA for more clarity. PR: https://static1.squarespace.com/static/5966cc2220099e91326caaec/t/69d7dbb80155f46e144ae2e5/1775754168227/4.9.26+press+release+petition_vf.pdf Petition: https://static1.squarespace.com/static/5966cc2220099e91326caaec/t/69d7e016d5986e16ff09b64c/1775755288463/Letter+Head+Petition+for+rulemaking+to+amend%C2%A021+CFR+%C2%A7+314.126+and+%C2%A0%C2%A7312.47+%281%29.pdf Reuters 4/1:

en

9:50

Global Advocacy. #NL51. Snippets! #SYNGAPcensus =...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2026/04/14

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: ***

en

9:57

DSC-III and Data - CURE SYNGAP1 is working tirelessly...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2026/04/04

Friday, April 3, 2026 - Week 14Just 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

en

9:55

It is time to get ready for clinical trials, this is...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2026/03/26

Thursday, March 26, 2026 - Week 13Thanks for NL50 Ed! cureSYNGAP1.org/NL50, I listened to Episode 1 and, as it turns out, it was March 12, 2021 (five 5️⃣ years ago), and it’s evergreen. SEVEN THINGS YOU NEED TO DO TO BE READY FOR CLINICAL TRIALS Stay Connected to CURE SYNGAP1. Fill in the Connect Form https://curesyngap1.org/connect Have an annual call with Lauren Subscribe to the CURE SYNGAP1 Podcast everywhere and to our YouTube Know your mutation, have your genetic report. Memorize it

en

9:49

We need to raise funds for the critical work of CURE...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2026/03/06

Friday, March 6, 2026 - Week 10WHAT DO WE NEED $ FOR? I talked in Episode 197 #S10e197 about scientific priorities, and in Episode 200 #S10e200 about areas of activity beyond science grants. All of this is what we need to fund. SPRINT FOR SYNGAP1 Sprint for SYNGAP is coming fast– 49 DAYS. Make a difference. Raise some money. Get on the map! Text sprint26 to 71777 https://curesyngap1.org/calendar/sprint4syngap-2026/ INAUGURAL SF NIGHT OF IMPACT Also to raise funds, please join us in SF on

en

9:57

#RareDiseaseWeek! We are doing much beyond grants…...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2026/02/25

Wednesday, February 25, 2026 - Week 9Thank you Virginie, Eric & Paulina for being in Cold DC right now with the Everylife Foundation! https://www.linkedin.com/posts/curesyngap1_raredc2026-syngap1-curesyngap1-activity-7432425642295586816-IVDQ NATURAL HISTORY STUDY Sign up for Citizen Health cureSYNGAP1.org/Citizen and ProMMiS cureSYNGAP1.org/ProMMiS And now the Citizen Health App on iOS

en

9:44

Support Clinical Trial Design for #SYNGAP1 via...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2026/02/17

Tuesday, February 17, 2026 - Week 8We are flat out, thank you to the team who work full-time on SYNGAP1: VM KAH LP PP & KF. CLINICAL TRIAL DESIGN We are Angelman-like. (Rett also) https://aesnet.org/abstractslisting/differentiating-key-symptoms-of-angelman-syndrome-as-and-syngap1-via-caregiver-reported-and-us-claims-data-to-understand-differences-between-how-providers-and-caregivers-view-impacts-on-patient-care Dravet or Angelman? Phase 1/2 is when we try it all. EEGs and NHS help with

en

9:58

All #SYNGAP1 Families need to take part in our...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2026/02/06

Thursday, February 5, 2026 - Week 6Happy #RareDisease & #BlackHistory Month! #NaturalHistory means how this disease progresses. Reminder: We have only been at this for 17 years, first patients were identified via Hamdan, 2009. https://pubmed.ncbi.nlm.nih.gov/19196676/ Retrospective Digital NHS: cureSYNGAP1.org/Citizen (Growing list of tools available to families, for free) Prospective Multi-disciplinary Multi-site NHS: ProMMiS cureSYNGAP1.org/ProMMiS Reminder, only possible by CS1

en

9:55

Funding Priorities. Biorepository. Genetic Testing....

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2026/02/03

All US Families, please take the time to fill out the ProMMiS Survey. It takes 5 minutes. It's super important. Even if you haven't been there, we need your feedback. English: https://curesyngap1.org/SurveyProMMiS Spanish: https://curesyngap1.org/encuestaProMMiS Our funding priorities for 2026 are Genetics, Behaviors & Isoforms. https://www.linkedin.com/posts/graglia_syngap1-curesyngap1-grants-activity-7421952845693788160-EHeK Pubmed 2026 is at

en

9:54

Stoke Tx shows us that ASO Clinical Development is...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2026/01/16

Friday, January 16, 2026 - Week 3Stoke 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 -

en

9:46

SYNGAP1 Related Disorder (SRD) Key Talking Points &...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2026/01/11

Saturday, January 10, 2026 - Week 2Here 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

en

9:47

Becky Quick launches CNBC Cures, Finding Your Voice &...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2026/01/09

Friday, January 9, 2026 - Week 2Big 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

en

9:56

Stockdale Paradox: Not getting out at Xmas, but we...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2026/01/02

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

en

9:57

AES ‘25 was incredible, Fundraising, PRV, Behaviors,...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2025/12/21

Saturday, December 20, 2025 - Five days till Christmas, 11 days left to raise funds to CURE SYNGAP1AES was exceptional in many ways, here are a few: 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 Our conference was standing room only and had investors! Even got a mention in their research report

en

14:07

New book by #SYNGAP1 mom for and about #GlassChild...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2025/12/01

#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:

en

9:57

AAV. Resources on cureSYNGAP1.org. Congrats to...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2025/11/27

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

en

9:55

#CureSYNGAP1 Conf: 1 week! #GivingTuesday: 5 days....

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2025/11/27

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

en

9:56

It’s time to UNLOCK THEIR TOMORROW - let’s raise...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2025/11/09

Sunday, November 9, 2025. Week 46.End of year campaign: UNLOCK THEIR TOMORROW, curesyngap1.org/unlock Why now? UNLOCK It’s giving season. Count our blessings and share what we have. CS1 has moved mountains this year: Staff, ProMMiS, etc. But we are just starting… Every single family should give and should solicit their friends. Yes, it’s a tough time. Yes, people have other causes. No (most of) your friends don’t have a SynGAPian. Miss 100% of the shots you don’t take. And remember,

en

9:54

Clinical Research, AI Dx, #NL47, Survey, #Autism...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2025/10/25

Saturday, October 25, 2025. Week 43.Time to advocate, ELF on the Hill, support available, apply now: https://www.linkedin.com/posts/everylifeorg_were-excited-to-join-everyone-on-capitol-activity-7384625926333943808-mO1U/ PUBMED at 47, and low. Clinical research! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2025-2025&sort=date - CHOP EEG ProMMiS

en

9:54

#SyngapCenus 1,675 Teacher Handout CC/VNS Citizen...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2025/10/03

Friday, October 3, 2025. Week 40.#SyngapCenus 1,675 https://curesyngap1.org/blog/syngap1-census-2025-update-39-q3-2025-total-1675/ Rachel J. made an educator handout https://curesyngap1.org/blog/supporting-students-with-syngap1-related-disorders/ Sign up for Citizen Health https://www.citizen.health/partners/srf CC/VNS Research w/ Citizen https://www.linkedin.com/posts/citizen-health-inc_syngap1-dee-raredisease-activity-7378823288950575105-YjP3 Rhymes with recent publication from Dr

en

205 results

Similar Podcasts

TaxTalent.com The Golden Rule Podcast

Adam Golden

TaxTalent.com Podcast

Tony Santiago

Handelsblatt Crime - spannende Streitfälle der deutschen Wirtschaft

Ina Karabasz, Solveig Gode, Sönke Iwersen

Deffner und Zschäpitz – Der Wirtschafts-Talk von WELT

WELT

Black Box - La scatola nera della finanza

Guido Brera e Gian Luca Comandini -...