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catherineandbb |
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| Catherine Calhoun |
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| Title and Organization: |
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Mom on a Mission (Parent Advocate), MAGIC Foundation, Fibrous Dysplasia Foundation, Children's Rare Disease Network |
| Country of Residence: |
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United States |
| Country of Birth: |
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United States |
| Languages: |
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English
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About Me |
I am Mom to a one in a million kid, Billy -- and his unstoppable big sister,
Ella. Billy, age 7, was diagnosed with McCune-Albright syndrome (MAS) in
2006. MAS is a rare genetic non-inherited syndrome caused by a chance
mutation in GNAS coding for the protein Gs alpha. It is characterized by
fibrous dysplasia (fragile bones), endocrine and other problems and
cafe-au-lait skin markings. It’s progressive. Practically speaking for bones
there is no treatment outside of surgery which in severe cases often fails.
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User is Offline.
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| User Joined: October 21, 2009 |
| Last Login: October 21, 2009
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Active Rank: #0 |
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Catherine Calhoun's Content |
456 TIG profile views
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