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 Jun 18, 2021
Friday Jun 18, 2021
#SPLASH4SYNGAP is on MONDAY.
- 3 days until June 21st!
- Take photos with the flyer https://syngap.fund/love = https://www.syngapresearchfund.org/post/share-your-love-for-someone-with-syngap1-for-splash4syngap
- Use hashtag #SYNGAPlove & #Splash4SYNGAP
DSC & BCH - It’s go time! Let’s raise some funds. Read the blogs
- Syngap.fund/biomarker = https://www.syngapresearchfund.org/post/srf-grant-to-boston-childrens-for-natural-history-biomarker-development
- Syngap.fund/BCH = https://www.syngapresearchfund.org/post/srf-grant-to-boston-childrens-for-natural-history-biomarker-development
ICD-10
- EveryLife case study! https://everylifefoundation.org/icd-code-roadmap/#toggle-id-13
- Dravet Business Cards. Copying is great! Copy us.
- ONE YEAR SOONER: Reminder why all this matters https://www.syngapresearchfund.org/post/oneyearsooner
ORCA: Via CB we are in. Stay tuned here. SYNGAP1 is one of the validation teams
- Rett Press Release https://www.prweb.com/releases/rett_syndrome_research_trust_announces_development_o[…]on_ability_of_individuals_with_rett_syndrome/prweb18012275.htm
- DUKE FDA GRANT https://populationhealth.duke.edu/news/orca-measure-expands-more-neurodevelopmental-diseases
GRANDPARENTS group is going strong
- Tell your parents about https://syngap.fund/grand = https://www.syngapresearchfund.org/post/loving-a-grandchild-with-syngap1
- Also had the c.333del (6!) and regular wednesday bit.ly/SRFHH at 5 PM Pacific.
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.