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Life's most persistent and urgent question is, 'What are you doing for others?'

- Dr. Martin Luther King, Jr.

 

The team at SRF is working hard on behalf of our community & patients.  I am grateful for every single, donor, volunteer and supporters -- they have a good answer for Dr. King's urgent question.

This newsletter is full of good news & three event invitations.  Read it, register for events, join our team, support our work.  We meaningfully improved the outlook for SYNGAP1 Research in 2020 & 2021 will be even better.  But it is going to take some serious work and funding.  We need your help.

Join us,

Mike

Tony's Dad & Managing Director of SRF 

 

Looking Back, Pushing Onward!

What did SRF achieve in 2020?  What is the plan for 2021? Are we doing enough for #SYNGAP1 patients?   This article is a brief summary but includes a detailed budget.  There is work to do, join us.

 

Developing a digital Neurobehavioral Evaluation Tool for SYNGAP1 patients & other NDDs #NET4NDD #SRFFraizer

We are raising for our first project of 2021.  This project is special because it will prepare us for clinical trials.  Also, we are working in partnership with some strong rare disease organizations to support this work--an example of collaboration in action for the benefit of our patients.

 

Three Events Coming Up - Register Now

  • Join our special live webinar  on Cannabinoids -- this will not be recorded.  Come and learn from Dr. Rajasekaran who works with GW, the makers of Epidiolex. Saturday, January 30 @ 9 PST.

 

  • Watch the premiere of #CelebratingCaren, a movie about the life of a 65 year old SynGAP patient diagnosed in 2020 followed by a panel discussion with the directors & cast.  Friday, February 26 @ 430 PST.

 

  • Únase a nosotros a el Primer Congreso Científico Virtual SYNGAP1 en Español #SRFCC1 el viernes 19 de febrero de 2021 a las 8 am EST.
 

What if you could get your SYNGAP1 child a treatment one year sooner?

If you read any article about Ciitizen or Natural History Studies, read this one.  Not just because it has links to all the others, but because this captures the essence of it.  Time is Brain, and Ciitizen will help us move faster.

 

Every quarter we update and publish a global count of self-identified SYNGAP1 patients.  This effort is an essential part of keeping Pharma & Biotech aware of our rapidly growing community.

 
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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
Mike@syngapresearchfund.org

 
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