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2 reviews

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

Rating: 5 stars  

I have been a Family Member of the 1p36 Family since 2005. My daughter was diagnosed when there was not much info on the Chromosome Deletion. I tried to find information on the internet but I was no Doctor. I found a Yahoo group that introduced me to a couple of members. I was alone and did not know where to turn to. In the past 8 years I have found Family that understood what I went through. My daughter Shelby passed away December 24th, 2012. I have never seen an out pour of Love, Sympathy and understanding of the loss of Shelby Girl. I knew that every word spoken was true and was heart felt because we are a FAMILY. You can never take away the Special Bond we all have for each other. When you can walk into a room filled with people that know exactly how you feel it is a feeling you can never replace. I am a 1p36 MOM and am very proud of all my FAMILY XO

How would you describe the help you got from this organization?


How likely are you to recommend this organization to a friend?


How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?


Role:  Client Served

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

Rating: 5 stars  

I have a duaghter who was diagnosed when she was 9 months old and she is now 5. My dauhgter is a Fighter like many of the families who are being helped by 1p36 Deletion Support & Awareness.

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

My family and I have been to the 1st ever conference and the 3rd conference last year. Meeting the many families with special needs kids has given me hope to know there are others families going through what I have with my daughter. Knowing we all relate

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

like to see more news stories around the world and funding to help support the many families dealing with 1p36 Chromosome Deletion. The more people know that it exists the more help we can get.

What I've enjoyed the most about my experience with this nonprofit is...

knowing we are related through our kids. I can count on any of the "1p36 Family" to get me through my difficult times.

The kinds of staff and volunteers that I met were...

my extended family are all great. They all know whart I am going through

If this organization had 10 million bucks, it could...

there would be so much the 1p36 Deletion Support & Awareness could do.

Ways to make it better...

funding and information is more available

In my opinion, the biggest challenges facing this organization are...


How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?


Role:  Client Served & I give support for other members with many questions and support for the families.