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karen27

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1 reviews

Review for 1p36 Deletion Support & Awareness, Bend, OR, USA

Rating: 5 stars  

1p36 Deletion Syndrome is a chromosome disorder that is characterized by moderate to severe intellectual disability, delayed growth, limited speech ability and distinct facial features. It is estimated that 1p36 Deletion Syndrome occurs in one in every 5,000 to 10,000 births though many individuals still go undiagnosed. 1p36 Deletion Syndrome is the most common chromosome deletion. Many parents when given their child's diagnosis do not receive more than the location of the deletion and a lesson on chromosomes & genetics. Parents feel alone and overwhelmed. In 2009, I created the 1p36 Deletion Support & Awareness website so parents, caregivers and the medical community could seek information about 1p36 Deletion Syndrome. What I did not know was the personal reward I would receive from answering the website emails. It is an amazing experience to be able to communicate with others who are going through the same experiences and introduce them to a welcoming group of people who support each other through the accomplishments and the difficult times.

I've personally experienced the results of this organization in...

attending the 1p36 DSA Conference. My family and I were lucky enough to attend Boston 2008 and Indianapolis, IN 2009. This year we will be attending the Salt Lake City 2010 conference.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2009

Role:  Board Member & I created and manage the 1p36 DSA website.