My Nonprofit Reviews

I have a 11 year old child with 1p36. At the time I adopted him I did not realize I was getting a wonderful great big family along with him. The 1p36 group is always there for me it my joy and in my fear and sadness. It is a great place to get advice and to get input in decision making. As a single parent I don't have anyone to throw ideas around with so I go to this group. I am never alone. There is much information that people in this group know about the syndrome that is not in any publications yet so in my opinion this group is made up of the experts .

This group has helped me for many years. I adopted a child with 1p36 and knew nothing at all about it. Our geneticist also was not familiar with it and recommended I join an on line support group. I have learned all I know about the syndrome from this group and , as a group we are learning new things about the syndrome every day. Last year I was blessed to host the annual conference which is a wonderful time of us all gathering together to share a laugh and a tear. and to not be different for a few days.

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