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donna14

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1 reviews

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

Rating: 5 stars  

My granddaughter has 1p36 Deletion Syndrome. When we first found out, we were devastated, she was one of very few children at the time diagnosed with this chromosomal disorder, and information was limited. They told use she may or may not progress. Today through 1p36 Deletion Support and Awareness Group, we communicate experiences about daily life with our little and some not so little Angels. Learning that we are not alone and that each child/individual with this disorder is different helped us to better understand our little one. We learn through the exchange of information and support we provide to each other. We have an annual conference and invite speakers that are knowledgeable on the latest developments on the research front, teaching tools, for example, this year we will have a speaker that will present information about signing and a workshops for the siblings of children with 1p36. Although 1p36 Deletion Awareness and Support recently received its non-profit status, we have families from around the world that have been communicating with each other for some time. Posting our joys, sorrows, frustrations, and even anger at times, has been a tremendous help to all of our families. We learn from each other, not sure of why your child is behaving in a certain manner, post it and you will get information from a parent with a child that has experienced a similar situation. Concerned about, for example your child going through puberty, someone with knowledge will answer your questions and give you suggestions. As a volunteer, education is essential to understanding our children, each child is different, each child learns in a different manner and the ability to share personal experiences has enriched our family beyond words. Going forward, I would like to see this organization continue to provide education and support for families as well as communities and to learn more about research advances for this genetic disorder.

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

The support I have received through this organization includes personal and family support. This organization allows us to communication concerns, issues and experiences and to understand that we are not alone.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

Role:  Volunteer & help to raise awareness in the community and assist in fundraising events.