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Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.

― Thích Nhất Hạnh

Dear Friend of SRF,

We have had two gatherings in the past few weeks that were extraordinary--they gave us hope.  The first Spanish Scientific Congress far exceeded our expectations with over 200 attending live to hear our 12 speakers. (Talks will be on  SRF YouTube soon.)  Then, this weekend we gathered with 150 live attendees to watch #CelebratingCaren together.  Many new connections were formed and our community continues to grow.  

The Science team is working on a number of new grants which we will be sharing soon, but what we can tell you is that research takes resources, so we have launched the #Sprint4Syngap, a 5k fun run you can do anywhere.  Please join or start a team and start fundraising.

Funding research creates jobs for scientists in labs working on SYNGAP1.  Not only does this get big brains focused on SynGAP now but it also returns dividends through the lifetimes of these researchers.  If you are a PhD looking for a post-doc, note these jobs:

We need this work to happen fast -- our families are working too hard just to keep up.  Watch this video of a family who is moving to another state to secure benefits for Emmitt’s care.  We applaud their foresight and tireless efforts for their son.  If you are curious about how your state compares, check out KidsWaivers.org and the State Report card.

More news:

  • We hit 100 enrolled on Ciitizen, but 7 are VUS, so we still have 7 spots for US families, sign up now
  • Congratulations to Virginie for joining Ciitizen, we are proud of you.
  • Two upcoming webinars on ABA (Saturday) and CRISPR (April).  Sign up on the #SRFwebinar page.
  •  We’ve got some killer new merchandise!  Visit the SRF store for great design.

There are still many opportunities to help accelerate SynGAP Research. If you have time to spare, please reach out, we need more volunteers with all skill sets.

Time is brain,

Mike

Tony's Dad & Managing Director of SRF 

 

Sign up for #Sprint4Syngap

 

Where should Emmitt live?

Watch this update from one family who is trying to figure out which State to live in to best help their son Emmitt. Have you considered state benefits as you think the years ahead for your loved one? These resources are helpful:

 

Webinars: Saturday & in April

 

Ciitizen: Sign up, data soon & Congrats Virginie!

SRF has a powerful registry in partnership with Ciitizen.  Three thing you need to know:

  • There are still a few spots in the US. Sign up now to help science. Ciitizen does all the work.
  • First cohort data will be released to researchers in April!
  • Congratulations to SRF Director Virginie McNamer for joining the Ciitizen Rare Neuro team.  They are lucky to have you.

Mike, Ashley, Virginie & Aaron, 2019.

 

Check out the Merch!

It's fun to wear that you care. It's also a great way to start conversation and tell people about SynGAP & SRF. Invite them to donate or volunteer. SRF has a new design team helping us with some great gear. Have ideas or want to help? Let us know.

100% OF YOUR FUNDS GO TO RESEARCH.

Follow us!

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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