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There is no power for change greater than a community discovering what it cares about.

– Margaret J. Wheatley

Dear Friend of SRF,

The SRF community is remarkable.  It is my privilege to work with parents who are actively improving the futures of their loved ones with SYNGAP1.    This community moves mountains.  According to the #SynGAPcensus which we just updated there are at least 762 Syngapians worldwide.  Today there are five things you need to know to help them:

  • The first study has launch on #ciitizen--enroll! Learn more today at 11 Pacific: Syngap.Fund/SSB
  • There are seven (7) SRF Webinars coming up, sign up: Syngap.Fund/Webinar
  • Our annual Spring Run #Sprint4Syngap is next weekend. It's not too late to join: Syngap.Fund/Sprint
  • Celebrating Caren is live on our website, watch & share: Syngap.Fund/Caren
  • SRF has launched a weekly 10 minute podcast to keep you current, subscribe: Syngap.Fund/10

Thank you for your part in this incredible community. If you have questions or want to do more, please reach out. Here are ten simple things you can do online to start.

Time is brain,

Mike

Tony's Dad & Managing Director of SRF 

 

1. ciitizen launches the Seizure, Sleep & Behavior Study.  Participate!

The SYNGAP1 Ciitizen Registry & Digital Natural History Study has partnered with a pharma company to do a short study on SYNGAP1.  SYNGAP families enrolled in Ciitizen--with patients age 3 to 18 who have seizures--are invited to join.  There is a $200 gift for completing the seizure tracker every dat for 30 days.  We are thrilled that half a year after we launched this platform it is already in use by industry.

  • We have a webinar today at 11 am Pacific to go over the study & answer questions: Syngap.Fund/SSB
  • Participants are asked to complete a one time sleep and behavior questionnaire & then to complete the seizure tracker every day for 30 consecutive days. 
  • You can begin now.  To get 30 days complete, you need to start in April.

If you have not yet signed up for Ciitizen, please do so, it is free & takes only minutes. The advantages for you are significant: all your records in one place & clinical trial matching. But also, researchers are able to analyze anonymized data which will speed therapies for all our loved ones. Sign up: Ciitizen.com/SYNGAP1

 

2. Six more webinars to join!

Please sign up for the upcoming webinars to be able to ask questions directly to our speakers.  Registrations are available on our webinar page Syngap.Fund/webinar & below.  If you have missed previous talks, you can watch recordings on our YouTube channel: Syngap.Fund/YouTube.

 

3. #Sprint4Syngap is next Saturday, April 24th

Tremendous gratitude to the families and donors who have already raised over $65,000 for SYNGAP research.  Remember 100% of funds go to research since our founders cover all operational costs. #SmartDonors give through SRF.  If you would like to donate or join a team, you still have ten days: Syngap.Fund/Sprint.  For those participating, remember to share your photos on social and use #Sprint4Syngap in your posts.

 

4. Celebrating Caren is on the SRF website

Have you seen it yet? Have you told your doctors, therapists, friends, church, co-workers and neighbors about it? Why not? It's a wonderful story of hope, resilience & strength. It's about family taking care of each other. And, it's about SYNGAP1.

What better way to begin conversations about your loved one with SynGAP? How better to help others understand what you are dealing with & how fast science is moving? And how much we need to fundraise to accelerate the science. Watch & share: Syngap.Fund/Caren.

Thank you to illumina for helping to make Celebrating Caren.

 

5. Syngap has a podcast: SYNGAP10

You're busy. There's too much going on. How are you supposed to keep track of all this SYNGAP1 stuff? How about you subscribe to our podcast & get weekly 10 minute briefing? Wherever you are: waiting for your loved one to finish an appointment, on a drive, exercising, etc. Subscribe to the SYNGAP10 podcast on Google, Apple, Spotify, etc. Let us keep you up to date. We are five episodes in, so you can catch up in less than an hour. Check out previous episodes on your podcast app or YouTube.

100% OF YOUR FUNDS GO TO RESEARCH.

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Stay in touch with us!

SynGAP Research Fund
1270 Lincoln Avenue
Palo Alto, California 94301
(650) 441-4191
Mike@syngapresearchfund.org

 
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