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Over 1200 families are caring for a loved one with the rare disease ”SynGAP” resulting from a variant of the SYNGAP1 gene. This 10 minute 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 the SynGAP Research Fund. SRF is a parent-led, all volunteer 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 https://www.syngapresearchfund.org/
Episodes
Thursday Oct 13, 2022
Event recaps with special guest hosts #S10e78
Thursday Oct 13, 2022
Thursday Oct 13, 2022
EVENT RECAPS
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
UPCOMING EVENTS
8 Days:
- October 21 #UFDcure Cannonball 2.0 https://www.syngapresearchfund.org/cannonball #CannonballForTheCure #RareBase
NOVEMBER IS GIVING SEASON!
4 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
7 Weeks:
December 1&2 in TN - SYNGAP1 CONFERENCE 2022: Charting our rare disease treatment path 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 78 of Syngap10 - October 13, 2022
#Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
Tuesday Oct 04, 2022
Tuesday Oct 04, 2022
INCREDIBLE MEETING, THANK YOU GC FOR THE HOSPITALITY!
https://www.linkedin.com/feed/update/urn:li:activity:6982842796319657984
https://www.forbes.com/sites/greglicholai/2022/10/03/renaissance-in-precision-neuroscience-expected/?sh=61d48fa0c8a3
GRANT ALERT
Coller mRNA Work at Hopkins https://www.eurekalert.org/news-releases/966873
COMPANY UPDATE
Stoke Tx https://www.stoketherapeutics.com/
Praxis Medicine https://praxismedicines.com/
Rarebase https://www.rarebase.org/
Beacon Biosignals https://beacon.bio/
Jaxon Labs - 2 Mice in Progress. https://secure.givelively.org/donate/syngap-research-fund-incorporated/patient-derived-mice-models-at-jax
Ionis - See Prosser Webinar! (Webinar 63) https://www.syngapresearchfund.org/webinars/targeting-alternative-splicing-of-syngap1-using-antisense-oligonucleotides
https://www.syngapresearchfund.org/post/unite-to-bike-syngap-research-fund-rides-in-person-at-the-million-dollar-bike-ride
Tevard https://tevard.com/
EVERY PATIENT MATTERS
Census is now at 1,135 Patients. https://www.syngapresearchfund.org/post/123-syngapcensus-2022-update-37-in-q3-2022
https://twitter.com/cureSYNGAP1/status/1576246751974944768
GLOBAL FILE
SRF Site is now in all Languages!
Colombia/LatAmerica 🇨🇴- Vicky is amazing hosting a dinner at https://simposio.acmgen.org/ see
- https://twitter.com/JMGraglia/status/1577319370081980416
- https://www.linkedin.com/posts/graglia_syngap1-activity-6983238494441672704-4ihv
EVENTS ARE COMING
NEXT WEEK 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
News Report: https://www.youtube.com/watch?v=a7sBTkL5KLo
2 Weeks:
October 12-15 in OH - Child Neurology Society
3 Weeks:
October 21 #UFDcure Cannonball 2.0 https://www.syngapresearchfund.org/cannonball #CannonballForTheCure #RareBase
NOVEMBER IS GIVING SEASON!
6 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
8 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
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 77 of Syngap10 - October 4, 2022
#Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
Monday Sep 26, 2022
Monday Sep 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
Sunday Sep 18, 2022
We 💜Events, Drugs 💊 Rarebase & NOSpharma, Data 👩🏾💻 Simons & Invitae #S10e75
Sunday Sep 18, 2022
Sunday Sep 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
Saturday Sep 10, 2022
Praxis + Ciitizen = PROGRESS #S10e74
Saturday Sep 10, 2022
Saturday Sep 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
Friday Sep 02, 2022
Leon #S10e73
Friday Sep 02, 2022
Friday Sep 02, 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
Saturday Aug 27, 2022
A day in the life of SRF: Greece, Ukraine, Rarebase, Zempleni #S10e72
Saturday Aug 27, 2022
Saturday Aug 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!
- 2 Weeks: September 12-14 in San Diego https://globalgenes.org/event/rare-patient-advocacy-summit/
- 5 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala
- 5 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap
- 10 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree
- 13 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 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
Tuesday Aug 23, 2022
THE NEXT FOUR MONTHS WILL COME FAST - GET READY! #S10e71
Tuesday Aug 23, 2022
Tuesday Aug 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!
- 3 Weeks: September 12-14 in San Diego https://globalgenes.org/event/rare-patient-advocacy-summit/
- 6 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala
- 6 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap
- 11 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree
- 14 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 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
Friday Aug 12, 2022
Friday Aug 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
Friday Jul 29, 2022
Why the Bowie grant is so exciting! Our second collaborative grant! #s10e69
Friday Jul 29, 2022
Friday Jul 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