The achievements of an organization are the results of the combined effort of each individual. - Vince Lombardi
October 1, 2021
Dear Friend of SRF,
Today is a BIG DAY. The volunteer team at SRF is making incredible things happen via their relentless collaboration. If you want to join this remarkable crew, let me know.
- Our ICD-10 code is finally effective, so please go and tell all your clinicians to add F78.A1 to your loved ones record and billing.
- We are releasing our SYNGAP1 Medical Considerations Document to help families work with their doctors, please download it and give us feedback!
- We released the latest #SYNGAPcensus with a global count of 883.
Around the corner, we have two major events:
Make sure you listen to the #SYNGAP10 podcast today to hear our first guest host!
Time is brain,
Tony's Dad & Managing Director of SRF
SYNGAP1 ICD-10 Code - F78.A1 - is live!
To learn more about the ICD-10 code be sure to see this article: syngap.fund/F78A1.
SynGAP Census Q3 Update
To learn more about the ICD-10 code be sure to see this article: syngap.fund/census
Join UFDtech & SRF online on October 6-8. The entire cross-country trek in a Tesla Model X will be live streamed here. Tune in for all the hijinks of three Syngap dads on a 3-day trip across the US.
Cannonball has already been featured in The Almanac, HottyToddy, and the Dallas Morning News.
Through Rarebase we are Collaborating at Scale
SRF Medical Considerations Available
"My doctor has never heard of SYNGAP1, what do I tell them?" We get this question all the time.
Special thanks to the volunteers, doctors, parents and designers who helped to build this strong answer.
Please send use it and send us feedback so we can make it better.
Mike was interviewed by Billy of BILLY Footwear. It was a really fun and interesting discussion.
Get a 10% off discount at Syngap.Fund/Billy
One Syngap mom said BILLY shoes are the only shoes her Syngapian wears!
SYNGAP1 Digital Natural History Study
We had our 1-year anniversary with Ciitizen. The numbers are impressive. If you haven't signed up yet, do so here! There is nothing more important than signing up for this study.
Also, Ciitizen has joined Invitae meaning more resources and expertise for our kids.
DUKE asked for a presentation about SYNGAP1 and our kids' communication ability. With the blessing of all included, the recording of the presentation has been added to our blog about ORCA. It iw worth 17 minutes of your day!
You need this book
SYGNAP1 mom Kelli McIntosh published a coloring book to help other parents cope with the daily challenge of a loved one with severe special needs. Get your copy today!
Kelli also has a wonderful YouTube channel about her son with Syngap1: Kelli & Kyle
Are you following SRF's TikTok?
Have you seen SRF's TikTok channel? SYNGAP1 mom Ashley Frye is killing it. Submit videos and ideas to Ashley via email.
Families, submit your story here to make sure your warrior is included.
Are you subscribed to the SYNGAP10 podcast?
You're busy. There's too much going on. How are you supposed to keep track of all this SYNGAP1 progress? Subscribe to the SYNGAP10 podcast on Google, Apple, Spotify, Amazon, Stitcher, etc. Let us keep you up to date. We are twenty-four (24) episodes in! Watch or listen!
100% OF YOUR FUNDS GO TO RESEARCH.
Stay in touch with us!
SynGAP Research Fund, 501(c)(3)
1270 Lincoln Avenue
Palo Alto, California 94301