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Adults, New parents, ABA, Misense and Money - Episode 9 of #Syngap10 - May 7th, 2021

Adults, New parents, ABA, Misense and Money - Episode 9 of #Syngap10 - May 7th, 2021

FromSynGAP10 weekly 10 minute updates on SYNGAP1


Adults, New parents, ABA, Misense and Money - Episode 9 of #Syngap10 - May 7th, 2021

FromSynGAP10 weekly 10 minute updates on SYNGAP1

ratings:
Length:
10 minutes
Released:
May 7, 2021
Format:
Podcast episode

Description

In this episode, Mike reflected on a conversations with and questions from SYNGAP parents who have responded to previous episodes of SYNGAP10.  As usual, it was packed.
Thanks to DISORDER for listing SYNGAP10 as one of the best Rare Disease podcasts.  We are honored.  https://www.rarediseasefilmfestival.com/rarediseasepodcasts
Reflections on conversation with parents, especially the parents of Adult SynGAPians.
We had a great webinar this week with Lori Unumb about ABA, Autism and Advocacy, you can view it on our webinars page https://www.syngapresearchfund.org/families/resources/webinars 
Next week we will have a great webinar with Prof. Haas of UBC about missense mutations.  Don't miss it. https://www.syngapresearchfund.org/webinars/functional-assessment-of-missense-variants-of-syngap1-kurt-haas
Ciitizen continues to grow, sign up at https://Ciitizen.com/SYNGAP1 
Mike answered a great question about cost and access.  Explaining why we are hopeful that payers will support our therapies.
Released:
May 7, 2021
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/