My Nonprofit Reviews
Review for 1p36 Deletion Support & Awareness, Bend, OR, USA
My daughter is now 4 years old, she was diagnosed with 1P36 Deletion at about 2 weeks old. Hearing that something is wrong with your child and that they will not lead a normal life is not something any parent wants to hear. I remember being completly devasted and had never heard of this syndrome. Our genetics doctor was able to shed some light on it but able to give us any detailed information. My husband went online and was researching it when he came upon information about a 1P36 Deletion Conference, we knew we had to go. We went there and met amazing people and families. To hear the stories of some of the things they had went through, I realized they were strong people and I had a lot to learn from them. There is now a 1P36 FaceBook group and it is wonderful, the word about 1P36 is getting out there and new people are joining our family it seems like daily. We have families from not just all over the USA but all over the world and evern though we have never met many of them face to face and may not live in the same country we are all still family. We all learn from each other, help each other, and cry with each other. That is what family is all about. This family makes dealing with a 1P36 Deletion child bearable and I couldn't imagine going through this journey without them. The people who take care of the things of this organization are amazing wonderful and are doing a great job!
If I had to make changes to this organization, I would...
I wouldn't change anything about the organization. I think they are doing a fabulous job. We just need help getting the word out there about 1P36 Deletion Syndrom.
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