SynGAP10 weekly 10 minute updates on SYNGAP1 (video)
Every Patient Matters.  Global Edition: SRF touching Ukraine/Poland 🇺🇦🇵🇱, Greece 🇬🇷, Colombia/LatAmerica 🇨🇴, Netherlands 🇳🇱 & UK 🇬🇧…  #S10e76

Every Patient Matters. Global Edition: SRF touching Ukraine/Poland 🇺🇦🇵🇱, Greece 🇬🇷, Colombia/LatAmerica 🇨🇴, Netherlands 🇳🇱 & UK 🇬🇧… #S10e76

September 26, 2022

EVERY PATIENT MATTERS

Lots of work with doctors these days.
e.g. Tony: DOI: 10.1159/000492706 https://www.karger.com/Article/FullText/492706
e.g. Jaxon: https://www.syngapresearchfund.org/post/syngap1-frequent-de-novo-missense-variant-alert-study-opportunity-for-p-gly344

WE ARE GLOBAL

SRF Site is now in all Languages!

Ukraine/Poland 🇺🇦🇵🇱- https://www.syngapresearchfund.org/post/122-a-letter-of-thanks-from-a-ukrainian-syngap-family #S10e72

Greece 🇬🇷- Greek framily from #S10e72 now working with expert in Spain. Thank you Dr. Aledo!

Colombia/LatAmerica 🇨🇴- Vicky is amazing. https://simposio.acmgen.org/

Netherlands 🇳🇱- We have a Rare-X Platform and everyone should engage. Sign up at
https://www.syngapresearchfund.org/webinars/intro-to-rare-xs-syngap1-data-collection-program
Watch #S10e71 starting at 5:30 https://youtu.be/iPoOjKBwPfY?t=333
Sign up: https://syngap1.rare-x.org/

UK 🇬🇧- News coming.

EVENTS ARE COMING

2 Weeks on October 8th!
New Jersey - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala 

South Carolina - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap 

3 Weeks:
October 12-15 in OH - Child Neurology Society

4 Weeks:
October 21 #UFDcure Cannonball 2.0 https://www.syngapresearchfund.org/cannonball #CannonballForTheCure #RareBase

NOVEMBER IS GIVING SEASON!

7 Weeks:
November 12 in GA - Sparks of Hope Gala https://cbo.io/bidapp/index.php?slug=syngap
November 14-15 in MA - PMC summit titled Personalized Medicine and the Patient

10 Weeks:
December 1 in TN - Syngap Science Meeting - https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2022-charting-our-rare-disease-treatment-path 

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

Apple podcasts: https://syngap.fund/10a

Episode 76 of Syngap10 - September 25, 2022 

#Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology


We 💜Events, Drugs 💊 Rarebase & NOSpharma, Data 👩🏾‍💻 Simons & Invitae #S10e75

We 💜Events, Drugs 💊 Rarebase & NOSpharma, Data 👩🏾‍💻 Simons & Invitae #S10e75

September 18, 2022

GLOBAL GENES WAS GREAT

Panel was impressive, will be sharing when recording is live, one point was small molecules…
#GlobalGenes #CareAboutRare

EVENTS ARE COMING

3 weeks!
October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap

8 weeks!
November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree

11 weeks!
December 1 in TN - Syngap Science Meeting - https://syngap.fund/treat

RAREBASE

Talked about this in #s10e27 https://youtu.be/r3bS9YepQ4s

We are investing in small molecule repurposing as fast as we can.  Four lines…

Cannonball 2.0 is on!  Checkout UFDtech on 21 October 2022!

LINK#UFDtech #CannonballForTheCure #RareBase

NOSPHARMA

Talked about Bowie in #s10e69 https://www.youtube.com/watch?v=xl_r4hoDlf8

Nospharma leverages unique biological causes of brain disorders within the context of what is already known, to deliver effective treatments. By placing biology-first, we've created new drugs and repurposed on-the-market drugs to improve treatment success.  We aim to deliver the most effective therapeutics for some of the most severe brain disorders, as quickly as possible.
from https://www.linkedin.com/company/nospharma/
#NOSpharma 

SIMONS/INVITAE PARTNERSHIP

Two of the most important players in the Rare Epilepsy Ecosystem are partnering and it’s great news for SYNGAP1 and SRF.
https://www.prnewswire.com/news-releases/invitae-and-simons-searchlight-partner-to-accelerate-research-through-data-sharing-301621469.html
Tweet: https://twitter.com/cureSYNGAP1/status/1569326298790789122
#SimonsFoundation #Autism #Invitae #ciitizen

Satterstrom paper associates SYNGAP1 with Autism strongly
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7250485/
See figure 2B https://pubmed.ncbi.nlm.nih.gov/31981491/#&gid=article-figures&pid=figure-2-uid-1

AUTISM BRAIN NETWORK

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

etc.

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

Apple podcasts: https://syngap.fund/10a

 

Episode 75 of Syngap10 - September 18, 2022 

 

#Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology


Praxis + Ciitizen = PROGRESS #S10e74

Praxis + Ciitizen = PROGRESS #S10e74

September 10, 2022

Praxis + Ciitizen = PROGRESS #S10e74

PRAXIS & CIITIZEN

 

Webinar On-Demand Registration - https://pages.questexinfo.com/invitaereg09082022/

 

Twitter - https://twitter.com/cureSYNGAP1/status/1568223901628637184?s=20&t=_UdtyirDq-dfLJD9Eo3GPw/ 

Facebook - https://www.facebook.com/cureSYNGAP1/posts/pfbid02usJYQPSQEr5yrUkhkfmcwhfit6WLgUFK56VXCaEVypCuVvxNb74pnkTiXqgZsdFtl/ 

LinkedIn - https://www.linkedin.com/feed/update/urn:li:activity:6973995629647720448/ 

 

LEON

Light a candle for Leon here https://www.bestattung-huettner.at/sterbefall/52048/?action=gedenkkerzen

 

GRANTS

So much good news coming.  We need to raise more money!  Please see list below!

 

GLOBAL GENES IS NEXT WEEK!

If you can’t come in person, register virtually! https://globalgenes.org/event/rare-patient-advocacy-summit/ 

 

STUFF I DIDN’T TALK ABOUT BUT WILL SOON

- Rarebase

- EXN ;-)

 

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

Apple podcasts: https://syngap.fund/10a

 

Episode 74 of #Syngap10 - September 9, 2022 

#GlobalGenes #PRAX090 #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration


Leon #S10e73

Leon #S10e73

September 2, 2022

 

SRF Page on Leon - https://www.syngapresearchfund.org/leon 

SRF Grant with Leon & Friends - https://www.eurekalert.org/news-releases/957967 

Light a candle for Leon - https://www.bestattung-huettner.at/sterbefall/52048/

SRF on Social for Leon
-https://www.facebook.com/cureSYNGAP1/posts/pfbid0RqALzmaTh8zGeT1KMUbfiXgv9o7PPR2JJPcZNPpR91ce7tYz5foWmb47652r8c2Ml 
- https://twitter.com/cureSYNGAP1/status/1564626096640901121 
- https://www.linkedin.com/feed/update/urn:li:activity:6970394298483630080 

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

Episode 73 of #Syngap10 - September 2, 2022 

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


A day in the life of SRF: Greece, Ukraine, Rarebase, Zempleni #S10e72

A day in the life of SRF: Greece, Ukraine, Rarebase, Zempleni #S10e72

August 27, 2022

0. SUPPORT OUR PATIENT IN UKRAINE

Fundraiser: https://secure.givelively.org/donate/syngap-research-fund-incorporated/help-syngap-family-escape-ukraine/ 

Tweet: https://twitter.com/JMGraglia/status/1563362473327005698 

 

1. LONGBOARD PHARMA & RAREBASE

Watch #S10e71 https://www.youtube.com/watch?v=iPoOjKBwPfY

 

2. SEIZURE TRACKER

Watch #S10e70 https://youtu.be/g6R9ejJnYbw
More detail in Webinar64 https://www.syngapresearchfund.org/webinars/64-syngap-study-seizure-tracker 

 

3. WEBINARS

PRAXIS & INVITAE - SEPT 8th at 10 PT https://pages.questexinfo.com/invitaereg09082022/?pk=Invitae 

BEN PROSSER - SEPT 29th at 9 PT https://www.syngapresearchfund.org/webinars/targeting-alternative-splicing-of-syngap1-using-antisense-oligonucleotides 

 

4. COME TO THE CONFERENCE 

Register: https://Syngap.Fund/Treat

Book a room: Link on the registration page.

 

5. LOTS OF EVENTS TOO!

 

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

Apple podcasts: https://syngap.fund/10a

 

Episode 72 of #Syngap10 - August 27, 2022 

#SalvaUkrani #helpneeded #Stoke #Acadia #CIITIZEN #INVITAE #SEIZURETRACKER #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration


THE NEXT FOUR MONTHS WILL COME FAST - GET READY! #S10e71

THE NEXT FOUR MONTHS WILL COME FAST - GET READY! #S10e71

August 23, 2022

0. RAREBASE https://www.rarebase.org/

We announced a partnership at year ago, check out #S10e27 https://www.youtube.com/watch?v=r3bS9YepQ4s
Now we are doing phase 2… stay tuned.

 

1. LONGBOARD PHARMA https://www.longboardpharma.com/

 STUDY- https://pacific.researchstudytrial.com/ (Shared in #S10e65 - https://www.youtube.com/watch?v=hSK21-y8fQI

 TALK - https://www.youtube.com/watch?v=s7l7wnrEX5E (Link shared in #S10e67 - https://www.youtube.com/watch?v=dVpl1UEBVXA)

2. SEIZURE TRACKER

Watch #S10e70 https://youtu.be/g6R9ejJnYbw
More detail in Webinar64 https://www.syngapresearchfund.org/webinars/64-syngap-study-seizure-tracker 

 

3. WEBINARS

PRAXIS INVITAE - SEPT 8th at 10 PT https://pages.questexinfo.com/invitaereg09082022/?pk=Invitae 

BEN PROSSER - SEPT 29th at 9 PT https://www.syngapresearchfund.org/webinars/targeting-alternative-splicing-of-syngap1-using-antisense-oligonucleotides 

 

4. REGISTRIES: CIITIZEN, SIMONS, RARE-X

CIITIZEN FIRST in US (MEDIAL RECORDS)

Sign up at https://Ciitizen.com/SYNGAP1

Refresh by logging into https://app.ciitizen.com 

Profile update: https://intercom.help/ciitizen-corp/en/articles/6421786-ciitizen-profile-update 

 

SIMONS GLOBALLY (GC INTERVIEWS)

Simons Searchlight participants can be from any country, as long as they speak English, Spanish, French or Dutch.  Click Join Us on https://www.simonssearchlight.org/research/what-we-study/syngap1/ 

 

RARE-X (QUESTIONS)

Sign up: https://syngap1.rare-x.org/ 

Webinar:  https://www.syngapresearchfund.org/webinars/intro-to-rare-xs-syngap1-data-collection-program

 

5. COME TO THE CONFERENCE 

Register: https://Syngap.Fund/Treat

Book a room: Link on the registration page.

 

6.COVID DEE SURVEY 

https://www.surveymonkey.com/r/DEEsCOVID19  

 

7. LOTS OF OTHER EVENTS TOO!

 

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

Apple podcasts: https://syngap.fund/10a

Episode 71 of #Syngap10 - August 23, 2022 

#PRAXIS #CIITIZEN #INVITAE #SEIZURETRACKER #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration 


YOU CAN HELP PRAXIS TO PREPARE FOR CLINICAL TRIAL READINESS FOR SYNGAP1 IN PARTNERSHIP WITH CIITIZEN & SRF

YOU CAN HELP PRAXIS TO PREPARE FOR CLINICAL TRIAL READINESS FOR SYNGAP1 IN PARTNERSHIP WITH CIITIZEN & SRF

August 12, 2022

REFRESH RECORDS COLLECTION 

Go to your providers and see what records were collected and when, if you have been back since then, ask them to recollect.

 

SIGN UP FOR TRACKER SURVEY

If you are signed up for ciitizen, you have an email from “Invitae Research Studies - research-studies@invitae.com”

The subject is “Invitation to participate in Invitae's Ciitizen rare neurological disorders research study”

 

DO IT EVERY DAY FOR 30 DAYS

 

WATCH THE WEBINAR (Number: 64)

FB: https://www.facebook.com/cureSYNGAP1/videos/5755953431123242/

YT: https://www.syngapresearchfund.org/webinars/64-syngap-study-seizure-tracker/ 

 

IF YOU HAVEN’T ALREADY, SIGN UP FOR CIITIZEN www.ciitizen.com/syngap1 

 

LEARN ABOUT PRAXIS: https://www.youtube.com/watch?v=Kh7O1bxXsSE 

 

KEY REMINDERS

 

FUNDRAISERS

BOWIE/ID in US syngap.fund/bowie

BOWIE/ID in CANADA syngap.fund/overcome

MICE: Help us Make 2!  https://syngap.fund/2mice

BIRTHDAYS: https://www.facebook.com/cureSYNGAP1/fundraisers 

 

EVENTS

4 Weeks: September 12-14 in San Diego https://globalgenes.org/event/rare-patient-advocacy-summit/ 

8 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala

8 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap 

9 Weeks: October 12-15 in OH - Child Neurology Society https://www.childneurologysociety.org/colleagues/network/cns-annual-meeting/ 

13 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree

13 Weeks: November 14-15 in MA - PMC summit titled Personalized Medicine & the Patient

16 Weeks: December 1 & 2 in TN - Syngap Science Meeting - https://syngap.fund/treat

 

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

Apple podcasts: https://syngap.fund/10a

 

Episode 70 of #Syngap10 - August 12, 2022 

 

#PRAXIS #CIITIZEN #INVITAE #SEIZURETRACKER #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration 


Why the Bowie grant is so exciting!  Our second collaborative grant! #s10e69

Why the Bowie grant is so exciting!  Our second collaborative grant! #s10e69

July 29, 2022

First grant: You can learn more about the Courtney grant in episode 66? #s10e66  https://www.youtube.com/watch?v=_eVw6Oc_V_Y (Like these and subscribe to our YouTube channel).

Second grant: Here is the press release and social media on the Bowie grant.
 - Facebook: https://www.facebook.com/cureSYNGAP1/posts/356581543313514 
 - Twitter:  https://twitter.com/curesyngap1/status/1552642957546700800
 - LinkedIn: https://www.linkedin.com/feed/update/urn:li:activity:6958432905563955200 
 - Press Release: https://www.eurekalert.org/news-releases/960181 

    1. We have LOTS of requests for support, many are good. So you should join us in supporting this one.
    2. This is exciting - Quality and Focused - We said yes.

The Bowie Grant story.  Excellent and committed to SYNGAP1.  Can’t help but like the guy.

Key words from press release:
Prof. Bowie believes that by correcting targets downstream of these synapses, a specific combination therapy can result in a common improvement of the ID phenotype. This grant will support his lab in investigating the efficacy of this therapy via SYNGAP1 mouse models…to test our idea of using a small molecule approach to target the molecular pathways giving rise to intellectual disability. I am excited to see what new insights this research will uncover.

    3. Global Collaboration - Overcome and Campdraft/SRF-Australia

Tax deductible Donations in TWO Countries for this grant:
    - US syngap.fund/bowie
    - CANADA syngap.fund/overcome

    4. Reminder: Infrastructure is huge and it’s here for you.

Don’t take for granted the work that is required to give you opportunities to fund.  Diligence, Grants to leading researchers, Webpages, Tax receipts, funds flowing directly to well governed organizations.  It’s here for you, fund the work!

FUNDRAISERS

- BOWIE/ID in US syngap.fund/bowie
- BOWIE/ID in CANADA syngap.fund/overcome
- MICE: Help us Make 2!  https://syngap.fund/2mice
- BIRTHDAYS: https://www.facebook.com/cureSYNGAP1/fundraisers 

EVENTS
- 6 Weeks: September 12-14 in San Diego https://globalgenes.org/event/rare-patient-advocacy-summit/ 
- 10 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/- fundraising/caren-leib-gala
- 10 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap
- 11 Weeks: October 12-15 in OH - Child Neurology Society https://www.childneurologysociety.org/colleagues/network/cns-annual-meeting/ 
- 15 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree
- 15 Weeks: November 14-15 in MA - PMC summit titled Personalized Medicine & the Patient
- 18 Weeks: December 1 & 2 in TN - Syngap Science Meeting - https://syngap.fund/treat

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

Episode 69 of #Syngap10 - July 29, 2022 

#Bowie #McGill #IntellectualDisability #overcomesyngap1 #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration 


This week was ripe with a promising future! #s10e68

This week was ripe with a promising future! #s10e68

July 25, 2022

Remember Episode 67? https://www.youtube.com/watch?v=dVpl1UEBVXA (Like these and subscribe to our YouTube channel).

 

Monday 

- Invitae Announcement

https://ir.invitae.com/news-and-events/press-releases/press-release-details/2022/Invitae-Announces-Strategic-Business-Realignment-to-Accelerate-Its-Path-to-Positive-Cash-Flow-and-Realize-Full-Potential-of-Industry-Leading-Genetics-Testing-Platform/default.aspx 

- Sign up for Ciitizen: https://syngap.fund/ciitizen 

- CMO email: “While the announcement focused  primarily on our operations and product portfolio, I wanted to take this opportunity to reinforce that Invitae remains unwavering in its commitment to patients. Cultivating strong relationships with Patient Advocacy Groups remains central to our business and our patient-centric philosophy.

 

We will continue to collaborate closely with our Patient Advocacy partners and communities to educate patients and their families on the value of genetic testing in diagnosing and potentially preventing disease. Together with you, we remain steadfast in empowering and supporting patients and highlighting the many opportunities where genetic testing may be beneficial. “

Pharmacogenetics in case you are curious: https://ir.invitae.com/news-and-events/press-releases/press-release-details/2022/Invitae-Launches-Expanded-Pharmacogenomics-Panel-and-Specialized-Mental-Health-Panel/default.aspx  

 

Tuesday 

- Prosser Pre-Print - Mapping PTBP splicing in human brain identifies targets for therapeutic splice switching including SYNGAP1

   - “We find that PTBP2 binding to SYNGAP1 mRNA promotes alternative splicing and non-sense mediated decay. Antisense oligonucleotides that disrupt PTBP binding sites on SYNGAP1 redirect splicing and increase gene and protein expression.”

  - https://twitter.com/cureSYNGAP1/status/1549408144987652104?s=20&t=u5iAtpoucdyaiT06Vt77pg  

 

Wednesday 

- Sample collection at Stanford.

- Planning for end of year, see below.

 

Thursday - CHOP Update 

- https://www.helbiglab.io/  

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

 

Friday - Disease concept interview, Rarebase & Colombia

- WCMC is looking to add to the pile of disease concept studies, which we VERY MUCH need. For the pile see Vlaskamp 2019, Jimenez-Gomez 2019, Smith-Hicks 2021, Wright 2022, Lyons-Warren 2022.

- https://www.rarebase.org/  

- Vicky is also building community in LatAm, there is a reunion this weekend!

https://twitter.com/VickyAArteaga/status/1544994120351059969?s=20&t=6f5x8BqfRFR5UyRvFMOc_w  

 

FUNDRAISERS

- MICE: Help us Make 2!  https://syngap.fund/2mice  

- BIRTHDAYS: https://www.facebook.com/cureSYNGAP1/fundraisers  

 

EVENTS

- 7 Weeks: September 12-14 in San Diego https://globalgenes.org/event/rare-patient-advocacy-summit/  

- 10 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala 

- 10 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap  

- 11 Weeks: October 12-15 in OH - Child Neurology Society 

- 15 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree 

- 16 Weeks: November 14-15 in MA - PMC summit titled Personalized Medicine & the Patient

- 18 Weeks: December 1 & 2 in TN - Syngap Science Meeting - https://syngap.fund/treat 

 

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 68 of #Syngap10 - July 25, 2022 

 

#Ciitizen #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration 


Take time to grieve & then come back to this community to grow. #s10e67

Take time to grieve & then come back to this community to grow. #s10e67

July 19, 2022

COMMUNITY 

Two blogs you must read:

- Charlie https://syngap.fund/charlie 
- MDBR https://syngap.fund/unite 

 

Vicky is also building community in LatAm, there is a reunion this weekend!

https://twitter.com/VickyAArteaga/status/1544994120351059969?s=20&t=6f5x8BqfRFR5UyRvFMOc_w 

 

LEARNING

Community is big, think Genetic Epilepsies, Remember the Dravet meeting?  Well now you can go too: https://dravetfoundation.org/events/dsf-conference/ 

- Stoke: https://www.youtube.com/watch?v=xHCYFDSwf-o
- Longboard: https://www.youtube.com/watch?v=s7l7wnrEX5E
- Epigenyx: https://www.youtube.com/watch?v=a-fBOr1W3Dw
- Ingo: https://www.youtube.com/watch?v=JVTnkQCtQNo

Check out this trial: https://pacific.researchstudytrial.com/?utm_source=other&utm_medium=Longboard&utm_campaign=patient_recruitment&r=16 

 

FUNDRAISERS

- MICE: Help us Make 2!  https://syngap.fund/2mice
- BIRTHDAYS: https://www.facebook.com/cureSYNGAP1/fundraisers

EVENTS

- 8 Weeks: September 12-14 in San Diego - https://globalgenes.org/event/rare-patient-advocacy-summit/ 
- 11 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala
- 11 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap 
- 16 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree
- 19 Weeks: December 1 in TN - Syngap Science Meeting - https://syngap.fund/treat

 

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 67 of #Syngap10 - July 18, 2022 

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


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