It is with a heavy heart today that I write that we have lost a member of our 1p36 family this week. Phoenix Guerra Schaefer passed away on August 9th, 2012 from injuries she received from a car accident. Phoenix was 27 and she leaves behind her two children, daughter Tru, who has 1p36 Deletion Syndrome and son Tre.

Phoenix was an important part of the birth of 1p36 Deletion Support & Awareness. She volunteered much of her time and energy to the organization at a time that was very critical to its success. After helping to found 1p36 DSA , she became a member of the board of trustees and served on the executive committee as vice president of public relations.

In addition to her work for the organization, she was also a support to other 1p36 parents. Phoenix did not hesitate to give out her contact information to anyone needing information, advice or a shoulder to cry on. She had a unique way of helping parents feel comfortable and no longer alone.

Phoenix was an amazing young woman who felt strongly about making a difference for 1p36 families. She was an advocate for her own daughter as well as all children with 1p36 Deletion Syndrome.

On behalf of 1p36 Deletion Support & Awareness, I extend our heartfelt sympathy to the Guerra and Schaefer families. Our thoughts and prayers are with you. The world has lost a fierce advocate for our 1p36 children.

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