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1 reviews

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

Rating: 5 stars  

I am so very proud to be a member of such a loving group. With the help of other members in this close knit community I have learned to provide the best care possible for my daughter, whom is bestowed with a 1p36 deletion. I have learned invaluable "tricks of the trade" in helping my disabled daughter live to her fullest potential. 1p36 Deletion Support & Awareness has provided me with information in the latest technologies; in physical, occupational, speech, & behavioral therapies, communication devices, nutritional needs, information about varies medical procedures ranging from surgeries dealing with tubes in ears to spinal fusion, reviews on medical equipment, & genetic testing. If there was ever a handbook to be printed on how to care for a child/loved one with a disability, 1p36 Deletion Support & Awareness would be able to provide brilliant input.

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

Their 2009 conference provided me such a sense of relief and hope. Their 2010 conference has me looking forward to seeing my "extended" family and learning from the highly qualified specialists that are associated with the group.

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

The sense of camaraderie

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


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

Change the face of the medical community

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?


Role:  Board Member & I have help raise awareness, some funds, and attended conferences for 1p36 DSA.