About Us

CTNNB1 Syndrome Awareness Worldwide (CSAW) is a 501(c)3 non-profit that arose out of a parent-only Facebook group with a core mission of providing information to parents of newly diagnosed children with CTNNB1 Syndrome, as well to physicians, therapists, geneticists, and others.  If you are a parent of a child with CTNNB1 Syndrome, please click on the Black Facebook icon below to request access to the CTNNB1 Parents Facebook page. Membership in the Family Facebook page (black facebook icon, below) is limited to parents of diagnosed children, but the forums on this site and all other social media sites linked above are open to the public.  Please consider supporting our organization on social media to raise awareness!

  • Facebook - Black Circle
  • CSAW Facebook
  • ctnnb1org
  • YouTube
Staff
Kayla Cayton, Executive Director
 (kayla.cayton@ctnnb1.org)
Board Officers and Executive Council
Mariana Parks, President
 (mariana.parks@ctnnb1.org)
Annie Wood, Vice President
 (annie.wood@ctnnb1.org)
Bethany Reed D’Alberto, Treasurer  (bethany.dalberto@ctnnb1.org)
Alen Amini, Secretary
(alen.amini@ctnnb1.org)
Anthony (Tony) Rose, Founder & President Emeritus  
(anthony.rose@ctnnb1.org)
Board Members
Kristina Richard 
(kristina.richard@ctnnb1.org)
Lauren Cochran (ACCT Liason)
(lauren.cochran@ctnnb1.org)
Volunteers
Nathalie D' Haucourt, Translator (French)
nathalie.dhaucourt@ctnnb1.org 
Tony King, Technology Committee
tony.king@ctnnb1.org 
Jenny Schrorer, Technology Committee
jenny.schroer@ctnnb1.org 
Theodore Madura, Special Projects
theodore.madura@ctnnb1.org 
Bruno Fiorentini, Special Projects
bruno.fiorentini@ctnnb1.org 
Privacy Policy

CTNNB1.org values the privacy of those affected by CTNNB1. CTNNB1.org will make reasonable efforts to de-identify all materials posted on the CTNNB1.org-controlled portions of the website. Materials posted by the webmaster will be stripped of names, ages, birthdates, and geo-encoding information, where appropriate, to protect the privacy of those affected. An exception will be materials voluntarily submitted to be posted on the ‘profiles’ page or on the homepage gallery. Materials to be posted on CTNNB1.org must be submitted via email to info@ctnnb1.org, giving CTNNB1.org permission to post. Submissions for minors must have permission of both parents. Submissions will be verified by a reasonable process (cross-verification with members of the CTNNB1 Facebook group). However, any material brought to our attention that falls outside of these guidelines will be removed within a reasonable timeframe.

 

CTNNB1.org does have an unmoderated user forum that falls outside of this privacy policy statement, but we will remove items that are proven to violate this policy.

The first facebook link requires acceptance to the family facebook page.  

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.