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,

Mike

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

 

Cannonball for a Cure #UFDcure

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

Rarebase, PBC, launches FUNCTION neuroscience drug discovery with 15 rare disease organizations.
SRF is proud to be an anchor partner alongside outstanding groups like FOXG1 Research, STXBP1 Disorders, ADNP Kids, Hereditary Neuropathy Foundation & Hope4Harper CDKL5.

Support our fundraiser for Rarebase drug discovery and follow on studies today.  You can donate directly or start a team. 

 

The 1st Annual Caren Leib Gala & Auction
October 23, 2021
Bridgewater, New Jersey

Tickets & sponsorship: syngap.fund/clg

 

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.

 

COMBINEDbrain & Duke receive a FDA grant to create scales for SYNGAP1 with SRF

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. 

 

Tomorrow! Spanish #SRFwebinar 

 

We have 128 Warriors

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!

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Stay in touch with us!

SynGAP Research Fund, 501(c)(3)
1270 Lincoln Avenue
Palo Alto, California 94301
(650) 441-4191
Info@SyngapResearchFund.org

 
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