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“I’m afraid to Hope again…” & Melissa – Reflections on ENDD at CHOP, #UFDCure Cannonball, Scramble -  #S10e119

“I’m afraid to Hope again…” & Melissa – Reflections on ENDD at CHOP, #UFDCure Cannonball, Scramble -  #S10e119

FromSynGAP10 weekly 10 minute updates on SYNGAP1


“I’m afraid to Hope again…” & Melissa – Reflections on ENDD at CHOP, #UFDCure Cannonball, Scramble -  #S10e119

FromSynGAP10 weekly 10 minute updates on SYNGAP1

ratings:
Length:
14 minutes
Released:
Oct 9, 2023
Format:
Podcast episode

Description

“I’m afraid to Hope again…” & Melissa – Reflections on ENDD at CHOP, #UFDCure Cannonball, Scramble -  #S10e119
 
My trip summary to CHOP.
Melissa and her family are remarkable. “Doing this for the next generation.”
 
Why are we afraid to hope?  Because fear is winning.  Everything comes from Fear or Love.  Focus on the love.  Feed that one.
https://www.demellospirituality.com/love-or-fear/
https://www.urbanbalance.com/the-story-of-two-wolves/ 
 
#UFDCure Cannonball - October 4-6
$128,075.83 so far at 83.6%
https://www.youtube.com/watch?v=ilnPIwVy6oY 
https://www.syngapresearchfund.org/cannonball
https://x.com/UFDTech/status/1711488218636357818?s=20 
 
Scramble - October 7, 2023
Have you read the Syngap Story on Julie yet? 
 
52 Days until the Conference - Sign up by Halloween - We need head counts.
Registration & Hotels 
Conference and Wild Type Shirts: 

Share your time and blood too!
Sign up for ciitizen! Sign up for CHOP! Volunteer!
Give us 5 stars everywhere.  Like Apple podcasts!
 
This is a podcast subscribe!

Episode 119 of #Syngap10 - October 9, 2023
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
Released:
Oct 9, 2023
Format:
Podcast episode

Titles in the series (100)

Over 900 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/