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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 Jan 07, 2022
Friday Jan 07, 2022
How to tell your family about SYNGAP1
As you process your loved ones’ recent SYNGAP diagnosis, when do you tell your family? How?
When? As soon as you can!
How, well that’s what we talk about today:
- This is a big deal, let’s not minimize it.
- I need your help
- Learn with me
- Fight insurance with me
- Help me rearrange my life
- Help with my SYNGAPian or their siblings
- Jump into my life, don’t give me space
- Raise funds with me to help bring therapies and cure closer to reality
- Raise funds at https://syngap.fund/give
- 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
Episode 42 of #Syngap10 - January 7, 2022
#family #thetalk #F78A1 #Syngap #Syngap1 #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics
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