Let’s catch the Genetic Therapy Tsunami for SYNGAP1!

Episode 40 of #Syngap10 - December 17, 2021

- Dennis’ tweet: https://twitter.com/LalDennis/status/1469502987173310466

- Sign up for #Ciitizen. https://Ciitizen.com/SYNGAP1 We are over 150!

- Clinical Trials link showing adult enrollment for Angelmans. https://www.clinicaltrialsregister.eu/ctr-search/trial/2019-003787-48/NL

- ORCA Work, learn more about it: https://populationhealth.duke.edu/research/center-health-measurement/expanding-observer-reported-communication-ability-orca-measure

- Learn about the Lighthouse: https://www.linkedin.com/posts/graglia_thelighthouse-activity-6877396385088471040-_ia_ & https://effieparks.com/podcast/episode-094-mike-and-nasha

- Add to the schedule June 11, 2022 -- Million Dollar Bike Ride! https://www.milliondollarbikeride.org/

- Emmitt got a #VNS https://twitter.com/SydneyStel/status/1470766587795972096

- phenylbutyrate

- https://www.statnews.com/2021/06/03/parents-hoped-an-existing-drug-might-keep-their-kids-from-having-seizures-then-they-saw-the-price/

- https://www.biorxiv.org/content/10.1101/2021.12.08.471799v1.full.pdf

- https://www.clinicaltrials.gov/ct2/show/NCT04937062?cond=slc6a1&draw=2&rank=1

- Start at 40:40 https://vimeo.com/610301620

- Raise some money! https://srf.salsalabs.org/srfdidyouknow

- What is SYNGAP1?  https://www.syngapresearchfund.org/home/what-is-syngap1

- Sign up for this 10 minute #podcast #SYNGAP10 here https://syngap.fund/10 if you want a direct link for Apple: https://syngap.fund/10a

#phenylbutyrate #MDBR #Syngap #Syngap1 #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics

Episode 40 of #Syngap10 - December 17, 2021  

- Dennis’ tweet: https://twitter.com/LalDennis/status/1469502987173310466 

- Sign up for #Ciitizen. https://Ciitizen.com/SYNGAP1 We are over 150! 

- Clinical Trials link showing adult enrollment for Angelmans. https://www.clinicaltrialsregister.eu/ctr-search/trial/2019-003787-48/NL

- ORCA Work, learn more about it: https://populationhealth.duke.edu/research/center-health-measurement/expanding-observer-reported-communication-ability-orca-measure  

- Learn about the Lighthouse: https://www.linkedin.com/posts/graglia_thelighthouse-activity-6877396385088471040-_ia_ & https://effieparks.com/podcast/episode-094-mike-and-nasha

- Add to the schedule June 11, 2022 -- Million Dollar Bike Ride! https://www.milliondollarbikeride.org/

- Emmitt got a #VNS https://twitter.com/SydneyStel/status/1470766587795972096

- phenylbutyrate 

    -https://www.statnews.com/2021/06/03/parents-hoped-an-existing-drug-might-keep-their-kids-from-having-seizures-then-they-saw-the-price/

    -https://www.biorxiv.org/content/10.1101/2021.12.08.471799v1.full.pdf

    -https://www.clinicaltrials.gov/ct2/show/NCT04937062?cond=slc6a1&draw=2&rank=1

    -Start at 40:40 https://vimeo.com/610301620

- Raise some money! https://srf.salsalabs.org/srfdidyouknow

- What is SYNGAP1?  https://www.syngapresearchfund.org/home/what-is-syngap1

- Sign up for this 10 minute #podcast #SYNGAP10 here https://syngap.fund/10 if you want a direct link for Apple: https://syngap.fund/10a 

#phenylbutyrate #MDBR #Syngap #Syngap1 #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics

Episode 39 of #Syngap10 - December 10, 2021

- Isoform paper https://www.biorxiv.org/content/10.1101/2021.12.05.471306v1

- Treatment one year sooner https://www.syngapresearchfund.org/post/oneyearsooner

- Syngap merch https://www.syngapresearchfund.org/shop

- SRF’s Blog https://www.syngapresearchfund.org/blog

- Fundraise https://syngap.fund/give

- Sign up for #Ciitizen. https://Ciitizen.com/SYNGAP1

- What is SYNGAP1?  https://www.syngapresearchfund.org/home/what-is-syngap1

- Sign up for this 10 minute #podcast #SYNGAP10 here https://syngap.fund/10

#TalentTuesday #volunteer #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics

Episode 39 of #Syngap10 - December 10, 2021  

- Isoform paper https://www.biorxiv.org/content/10.1101/2021.12.05.471306v1 

- Treatment one year sooner https://www.syngapresearchfund.org/post/oneyearsooner 

- Syngap merch https://www.syngapresearchfund.org/shop 

- SRF’s Blog https://www.syngapresearchfund.org/blog 

- Fundraise https://syngap.fund/give 

- Sign up for #Ciitizen. https://Ciitizen.com/SYNGAP1 

- What is SYNGAP1?  https://www.syngapresearchfund.org/home/what-is-syngap1

- Sign up for this 10 minute #podcast #SYNGAP10 here https://syngap.fund/10

#TalentTuesday #volunteer #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics

Let’s make sure SYNGAP1 is cured in our lifetime.  It’s up to us.

Roundtable 3 #SRFRT3 was a great success, special thanks to all speakers.

The #FAST #Angleman meeting is incredible. https://cureangelman.org/events/gala2021

Sign up for #Ciitizen. https://Ciitizen.com/SYNGAP1

Raise funds for SYNGAP1

- Facebook Fundraisers: http://syngap.fund/FBFun

- Giving Tuesday Fundraiser: https://syngap.fund/gt21

- What is SYNGAP1?  https://www.syngapresearchfund.org/home/what-is-syngap1

- Sign up for this 10 minute #podcast #SYNGAP10 here https://syngap.fund/10

#F78A1 #FAST #Angelman #SRFRT3 #SyngapaseRT #Syngap1 #syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics

Let’s make sure SYNGAP1 is cured in our lifetime.  It’s up to us.

Roundtable 3 #SRFRT3 was a great success, special thanks to all speakers.

The #FAST #Angleman meeting is incredible. https://cureangelman.org/events/gala2021 

Sign up for #Ciitizen. https://Ciitizen.com/SYNGAP1 

Raise funds for SYNGAP1

- Facebook Fundraisers: http://syngap.fund/FBFun

- Giving Tuesday Fundraiser: https://syngap.fund/gt21

- What is SYNGAP1?  https://www.syngapresearchfund.org/home/what-is-syngap1

- Sign up for this 10 minute #podcast #SYNGAP10 here https://syngap.fund/10

#F78A1 #FAST #Angelman #SRFRT3 #SyngapaseRT #Syngap1 #syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics

Episode 37 of #Syngap10 - November 26th, 2021

Support SRF this GivingTuesday! With guest host, Caitlin Kaspar, Syngap sibling, nonprofit professional

- Getting diagnosed with Syngap1 as an adult

- It’s a fact; nonprofits have overhead

   - SRF founders cover all overhead! www.syngapresearchfund.org/post/7-reasons-smartdonors-fight-syngap1-via-srf

   - SRF is all about transparency syngap.fund/finance

   - SRF has 600K out in grants in 2021 syngap.fund/grants

- End of Year Giving

- Shop and donate at Amazon Smile bit.ly/SRF_Smile

- GivingTuesday Nov 30 syngap.fund/gt21

- End of year giving letter created for families to share syngap.fund/eoy

#overhead #ciitizen #givingtuesday #adultswithdisabilities #leadership #careaboutrare #GlobalGenes #minted #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics

Support SRF this GivingTuesday! With guest host, Caitlin Kaspar, Syngap sibling, nonprofit professional

- Getting diagnosed with Syngap1 as an adult 

- It’s a fact; nonprofits have overhead 

   - SRF founders cover all overhead! www.syngapresearchfund.org/post/7-reasons-smartdonors-fight-syngap1-via-srf 

   - SRF is all about transparency syngap.fund/finance

   - SRF has 600K out in grants in 2021 syngap.fund/grants 

- End of Year Giving

- Shop and donate at Amazon Smile bit.ly/SRF_Smile 

- GivingTuesday Nov 30 syngap.fund/gt21

- End of year giving letter created for families to share syngap.fund/eoy

Episode 37 - November 26th, 2021

Top 5:

Studies:

Old Guard:

New wave of leaders:

GET YOUR CARDS!