Site © 2017-2019 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. 



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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 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 charity in Ohio, USA as CTNNB1 Syndrome Awareness Worldwide. As you may have read elsewhere on this site, we are seeking donations to support our filing for non-profit status as a 501(c)(3) organization.   All donations that are given prior to our achieving that status cannot be deducted from your US income tax. However, we desperately need your support right now to help us achieve this designation. Our initial projection for filing fees and non-profit status expenses is around $500 US for the first year.


Our goal is to be 100% transparent to our donors about how their money is being spent.  Click here to see a spreadsheet showing donations and expenditures since our founding in 2017.  Our goal is to update this spreadsheet at least once a week.  Until we file for non-profit status, all funds received will go toward filing expenses, unless you designate otherwise.   


Thanks for all you do to support us!