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Vicie M.

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2 reviews

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

Rating: 5 stars  

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 .

Role:  Client Served

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

Rating: 5 stars  

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.

If I had to make changes to this organization, I would...

find a way to get the news out about the group because I know there are still a lot of families out there dealing with 1p36 that are afraid and alone and don't know about us .

Would you volunteer for this group again?


For the time you spent, how much of an impact did you feel your work or activity had?


Did the organization use your time wisely?

Very Well

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Role:  Volunteer