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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
Friday Mar 25, 2022
Friday Mar 25, 2022
Three events to plan on:
- Jackie’s webinar on Severe Behaviors, Wednesday April 6th. https://us02web.zoom.us/webinar/register/WN_5ojt2t3PSCWqGROpGaxVEw
- Dr. Anderson’s webinar on Stem Cells, Thursday April 28th. https://us02web.zoom.us/webinar/register/WN_23J7Zy22R_-yDrz8RJHXHg
- 2nd Annual #Sprint4Syngap is coming April 30, 2022, help us raise funds by starting a team and/or donating! Sign up now: https://syngap.fund/sprint2022
Here are the dates to think about for the rest of the year…
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April 7-8 |
5th Dianalund International Conference on Epilepsy - Implementing Epilepsy Genetics in Clinical Practice |
Denmark |
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April 30 |
Sprint for Syngap |
Worldwide |
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May 13-15 |
EpiCon Convention |
Nashville, TN |
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June 5 – 6 |
Epilepsy Foundation Pipeline Conference |
Santa Clara, CA |
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June 11 |
Million Dollar Bike Ride |
Philadelphia, PA |
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June 21 |
Splash for Syngap |
Worldwide |
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June 23-25 |
2022 DSF Family & Professional Conference |
Fort Worth, TX |
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June 25 |
Dr. Perry presenting exclusively to Syngap1 families |
Fort Worth, TX |
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July 11-13 |
World Orphan Drug Congress |
Boston, MA |
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September 26 |
Global Genes Patient Advocacy Summit |
San Diego, CA |
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October 8 |
Scramble for Syngap |
Travelers Rest, SC |
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October 8 |
2nd Annual Caren Leib Gala |
New Jersey |
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Oct 31-Nov 1 |
Epilepsy Awareness Day Expo |
Anaheim, CA |
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November 2 |
Epilepsy Awareness Day Disneyland |
Anaheim, CA |
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November 12 |
Sparks of Hope |
Atlanta, GA |
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November 29 |
Giving Tuesday |
Worldwide |
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December 1 |
Scientific Meeting hosted by SRF |
Nashville, TN |
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December 2-6 |
AES & the 4th Annual Synapse Roundtable |
Nashville, TN |
Thank you to #UFDTech for your fundraiser today, check it out: https://www.youtube.com/watch?v=Whkborgb-90
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 53 of #Syngap10 - March 25, 2022
#SYNGAP1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
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