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Site © 2017-2020 by CTNNB1 Syndrome Awareness Worldwide (CSAW).  The information contained in this site should not be construed as a substitute for personal medical advice. Please consult with a qualified clinician in all matters relating to genetic diagnosis, management and health. 



CSAW Family and Friends,

Yesterday saw the launch of our sister organization, ACCT (Advancing CTNNB1 Cures and Treatments). There have been questions from some about the difference between the two organizations. Let me address those and clarify.


CSAW - CTNNB1 Syndrome Awareness Worldwide - was founded with the mission of raising awareness of CTNNB1 Syndrome, connecting affected families, and providing information about symptoms, diagnosis, treatments, and therapies - including identifying and supporting promising research, such as ACCT. CSAW's operating costs are modest, focused on creating a connected community for those dealing with CTNNB1's challenges as research toward treatment continues. ACCT is dedicated solely to funding research that will lead to the development of treatments for those affected, a critical, and more expensive, proposition. CSAW and ACCT are partners in our shared mission of helping our children and families live their best lives. We have purposely co-branded with our bright and optimistic yellow, and each organization's website links to the other's. If you make a contribution to the CSAW page, you may designate the percentage you wish to go to each, or you may go to either or both pages to make separate contributions. Thanks to all of you for your ongoing support for our CTNNB1 community. If you have any further questions, please don't hesitate to ask.

Mariana Parks,

President CSAW

Do you remember what it was like to get the diagnosis of CTNNB1 Syndrome?  You frantically searched the Internet for some information about CTNNB1 Syndrome, but could only find a few scientific studies.  You wondered how you were going to help your child achieve the life that you had dreamed of for him or her.  This was something that each of us at CTNNB1 Syndrome Awareness Worldwide experienced, and it is the driving force behind our creation of


We are registered as a 501(c)3 charity in Ohio, USA as CTNNB1 Syndrome Awareness Worldwide. Our goal is to be 100% transparent to our donors about how their money is being spent.   We are currently rated as a Guidestar Platinum charity, the highest possible rating for transparency, and your assurance of our commitment to using your donation wisely.


You can donate to CSAW via Facebook at, The PayPal Giving Fund, Guidestar, and PayPal Donate are linked below.  You can also help us while you shop on Amazon by finding us on using the link below.  You can also send checks in snail mail to CTNNB1 Syndrome Awareness Worldwide, 6077 Far Hills Ave #150, Dayton, OH 45459.


Thanks for all you do to support us!