28.6K
Downloads
158
Episodes
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 Apr 30, 2021
Friday Apr 30, 2021
SYNGAP10 - Episode 8 - BREAKING NEWS
This episode is an absolute must. Don't miss it.
- Reminder that #SSB30 is happening now, the first pharma sponsored study on #ciitizen. If you are enrolled in Ciitizen, start doing your seizure tracker today:
🔗 https://Syngap.Fund/ST
- If you have not yet signed up for Ciitizen, there is still time, it's free: https://www.ciitizen.com/syngap1/
- 🚨 Breaking: We have reason to believe that we will get an ICD-10 code in June, effective 10/1/21. This is a big deal.
Background link: https://www.syngapresearchfund.org/post/syngap-could-have-an-icd-10-code-f78-a1-as-soon-as-next-year
Referenced link from podcast: https://www.cms.gov/medicare/acute-inpatient-pps/fy-2022-ipps-proposed-rule-home-page
- #Sprint4Syngap raised $122,500+. Huge thanks to everyone. Two great videos of the community building that took place are:
Colombia 🇨🇴 https://youtu.be/4jYGJJnbLf8
Boston https://youtu.be/edlfSW1kvKE
- Welcome to 4 new families just diagnosed in the past week. 🤯
- If you want to support SRF, call us, there is some much good work to do!
This is a podcast, sign up via your favorite service or watch previous episodes at: https://www.syngapresearchfund.org/syngap10-podcast
Comments (0)
To leave or reply to comments, please download free Podbean or
No Comments
To leave or reply to comments,
please download free Podbean App.