SYNGAP10
Weekly 10-minute updates on SYNGAP1 with Mike Graglia.
Getting ready for Global Genes, Cannonball Scramble Gala & the SYNGAP1 Conference — #S10e116
Congrats to… - Allen Burke 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
Register: https://us02web.zoom.us/webinar/register/WN_tXX0ZKcgQqm9heZgf0AfDg
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
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
September 19, 2023
Getting ready for Global Genes, Cannonball Scramble Gala & the SYNGAP1 Conference — #S10e116
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
Register: https://us02web.zoom.us/webinar/register/WN_tXX0ZKcgQqm9heZgf0AfDg
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
- 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
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
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Send in a voice message: https://podcasters.spotify.com/pod/show/syngap10/message
September 19, 2023
Katrien Deckers reflects on European 🇪🇺 Epilepsy Conference – #S10e115 (Volume up)
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/
Register for the SRF Conference, it’s going to be fabulous. - Registration link: https://Syngap.Fund/Orlando
- 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-podcastApple podcasts: - https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818
Episode 115 of #Syngap10 - September 17, 2023
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
September 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/
Register for the SRF Conference, it’s going to be fabulous. - Registration link: https://Syngap.Fund/Orlando
- 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-podcastApple podcasts: - https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818
Episode 115 of #Syngap10 - September 17, 2023
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
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Send in a voice message: https://podcasters.spotify.com/pod/show/syngap10/message
September 17, 2023
Naya, Pods, ILAE, Warriors, Talking to Pharma, Monica H. is doing Cannonball! Another week in Syngap-land — #S10e114
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
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
September 10, 2023
Naya, Pods, ILAE, Warriors, Talking to Pharma, Monica H. is doing Cannonball! Another week in Syngap-land — #S10e114
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/id1705809525CHOP - Sign up! https://drive.google.com/file/d/1eCVGmQ5b3RfL0ZiMpjoWIgVpFaSfEVOh/view?usp=drivesdkILAE 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-syngap1Warriors - Sign up - https://www.syngapresearchfund.org/syngap-warrior/addisonConference - 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#agendaSign 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 60611This 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/id6464522917Episode 114 of #Syngap10 - September 10, 2023#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
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Send in a voice message: https://podcasters.spotify.com/pod/show/syngap10/message
September 10, 2023
SYNGAP10
SYNGAP10 is a 10-minute weekly blog to keep parents and families up-to-date on what the team at SynGAP Research Fund (SRF) is doing to advocate for patients & advance research into SYNGAP1. If you do nothing else, listen to or watch this and let us know what you think.
Host
Mike Graglia
Mike has always worked on complicated problems – he can’t help himself. So when his son was diagnosed with SYNGAP1 in 2018, he founded the SynGAP Research Fund and continues to lead it as a volunteer. In the broader Rare Neuro community, Mike serves on the Executive Board of COMBINEDbrain, is a member of the AES Epilepsy Research Benchmarks Stewards Committee and is the Co-Chair of the Innovation and Value Initiative 2022 Methods Summit.
Mike comes from a career in public policy, international development and strategy. Previous roles have included establishing a new program at New America, a DC think tank, Budget & Planning at both the Gates Foundation & Emerson Collective, healthcare consulting at BCG, developing a tertiary education program with the World Bank Group, managing a refugee program for the International Catholic Migration Commission in Zimbabwe, and teaching math in Peace Corps Namibia.
Graglia has an MBA from Columbia where he was a Bronfman Fellow, an MA from Johns Hopkins School of Advanced International Studies where he was a Soros Fellow, and a BS in mathematics from Gonzaga University, S.J.
Graglia lives with his wife Ashley & two sons in Marin, California.
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