Site © 2017 par Anthony W. Rose (anthony.rose@ctnnb1.org) pour la sensibilisation mondiale au syndrome du CTNNB1. L’information présente sur ce site ne se substitue pas à un conseil médical personnalisé. Veuillez consulter un clinicien qualifié pour toutes questions concernant le diagnostic génétique, la gestion de la maladie et
la santé.

ABOUT US

About CSAW

Traducción en curso, vuelva pronto!

CTNNB1 Syndrome Awareness Worldwide (CSAW) is a parent group with a core mission of providing information about CTNNB1 Syndrome 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 Facebook icon to request access to the CTNNB1 Parents Facebook page. 

 

 

Membership in the Facebook page is limited to parents of diagnosed children, but the forums on this site are open to the public.

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CTNNB1 Syndrome Awareness Worldwide

Abby Loudermilk
Interim Executive Director

Abby A. Loudermilk is an attorney licensed in the State of Texas.  Abby graduated from Southeastern Louisiana University with a B.A. in English in 2003.  She decided to return to her hometown of San Antonio to attend law school at St. Mary’s University School and received her juris doctorate in 2008. She is a solo practicioner officing in the historical Monte Vista District of San Antonio, Texas.  

 

She is the mother of a little girl who was diagnosed with CTNNB1 Syndrome in 2017. 

Catharina Johanna Maria Laan, Vice-President
Kathryn Alack Howard, Secretary
Bethany Reed D’Alberto, Treasurer & Development Director
-Officers-
Abby Loudermilk, General Counsel
-Board Members-
Ann Daly
Tracy Hamer Cameron
Kristina Richard
-Volunteers-
Kirsten de Jager-Laan, Translator (Dutch)
Donnie Cameron, Translator (Spanish)
Nathalie D., Translator (French) 
Julie Evans, PR 
Anthony W. Rose, Web Developer 

CONTACT US

Contact Us

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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 anthony.rose@ctnnb1.org, giving CTNNB1.org permission to post. 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.