The world is wide, and I will not waste my life in friction when it could be turned into momentum.

- Frances Willard

November 3, 2021

Dear Friend of SRF,

SRF is gaining momentum--it is clear in this newsletter.  Before I glance back at the past 30 days, I remind you of some great opportunities in the next 30 days:

On top of that we have a merchandise fundraiser with Kendra Scott tomorrow and Friday, details below.

Looking back over the past month is inspiring.

  • We announced a major grant to the Poduri Lab BCH for $308,000 to prepare for clinical trials
  • Not satisfied with the ICD-10 code in the US, we shared our effort to secure an ICD-11 & encouraged our global partners to join our effort.
  • The 1st Annual Caren Lieb Gala was a success & the #UFDcure Cannonball raised over $150,000
  • Our co-founder Ashley Evans was profiled in both Forbes and Business Insider helping to raise awareness for SYNGAP1 and the work of SRF.

We are making the future better for our loved ones.  If you want to be more involved, please reach out.

Time is brain,

Mike

Tony's Dad & Managing Director of SRF 

 

Register now for the SRF Webinar tomorrow & the 3rd Roundtable in a month!

 

syngap.fund/mc

syngap.fund/rt3

 

Join the Ciitizen Study by November 15th

We are recruiting for Ciitizen Cohort 3 and we only have a few spaces remaining. Patients who join this cohort this month will be included in the next data share to researchers in 2022.  Help us advance science by joining this study! Sign up at ciitizen.com/SYNGAP1

 

Get ready for Giving Tuesday 2021 by starting a fundraiser

Every year, Giving Tuesday is a day where people promote and support non-profits close to their hearts.  This year, you can join SRF to raise funds for SYNGAP1 Research.  Go to syngap.fund/gt21 and start your own fundraiser!  Remember, 100% of funds raised go to research.

 

Kendra Scott Fundraiser Starts Tomorrow

Tomorrow and Friday (11/4-11/5) use code GIVEBACK-AUGUC at checkout online at kendrascott.com and 20% of your purchase goes to SRF.

Many thanks to Kendra Scott for supporting SRF!

 

News You Can Use: SYNGAP1 Medical Considerations

SRF has developed a Medical Consideration document to share with your doctors.  We welcome any feedback on this document.  Please let us know what you love and what is missing. We will have a meeting with researchers for feedback later this month.  

You can also find SYNGAP1 doctors on this page or add your own to the database.

 

SRF secured an ICD10 code for SYNGAP1 & we are already working on ICD11

SRF secured an ICD10 code for SYNGAP1, F78.A1. We are now working on the next code, ICD11. This will be effective worldwide! Learn about our work & join us in advocating to the World Health Organization (WHO). 

 

Event Recap: 1st Annual Caren Leib Gala

On the evening of October 23, 2021, SRF hosted our first gala in New Jersey. With over 90 attendees, including 16 Syngap families and three Syngapians in attendance, it was a very special evening. Thank you to all who came, donated, and presented in support of SRF.  Read a recap of the evening

Family members connecting 

Kessler family and star Caren

So much joy!

Dr. Ben Prosser gave a moving presentation

 

Cannonball for a Cure was a hit!

We cannot thank the three Syngap dads Brett, Peter and Kevin enough for their highly entertaining fundraiser. They gave so much energy and sacrificed hours of sleep to live-stream their way across the entire US in a Tesla.

Watch our thank you video to all of the 1300+ donors! 

How it started

How it ended

Cross-country antics

Target exceeded! 

 

Are you following SRF's TikTok?

Go subscribe to SRF's TikTok channel! SYNGAP1 mom Ashley Frye creates some great content. Submit videos and ideas to Ashley via email. 

 

Get to know 137 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 33 episodes in! So if you are just joining us you can catch up in 5.5 hours!

100% OF YOUR FUNDS GO TO RESEARCH.

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

 
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