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chelle7544

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3 reviews

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

Rating: 5 stars  

We have attended 1P36DSA conferences and they have been amazing. They are well organized. They have informative speakers, and they bring a community of people together that share a special bond. They have offered families a chance to meet other people with their children's disability. It is one of the best experiences I have ever had. They are wonderful! Can't say enough good things.

Role:  Client Served
 

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

Rating: 5 stars  

This organization is a group of parents that are spreading info to health care providers and teachers about 1p36 deletion syndrome. This is extremly important because our kids can be misdiagnosed with illnesses that stem from the disability. The doctors will have the proper education to help new parents understand the disability. Provide therapists with the information so the children can live up to their fullest potential. Allow teachers to teach with the appropriate techniques. To spread awareness to open much needed doors.

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

Every 1p family benefits

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

As this non profit grows I would love to see everything they dream of come true.

Role:  Client Served & Provide others with info about 1p36 deletion syndrome.
 

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

Rating: 5 stars  

1p36 deletion syndrome is a relatively new diagnosis. This organization is providing knowledge to the medical community and others about this disability. It is crucial for our children to get more help. The more information out there the better chance our children have to reach their fullest potential. They also have provided the opportunities for other 1p families to meet.

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

Finding other families and gaining more knowledge about my son's disability.

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

I think the only thing I would like to see is the non profit grow and be able to help families even more.

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

Knowing other families in my situation.

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

wonderful, amazing people

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

Help a population of families that have been forgotten

Ways to make it better...

no complaints

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

growth. I want to see them grow into something amazing.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

Role:  General Member of the Public & I have a child with 1p.