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July 26, 2011

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July 26, 2011

My daughter was diagnosed with this devastating disorder 5 years ago. She is now completely dependent in all aspects of daily living.

NBIA is a rare genetic disorder that slowly and sometimes not so slowly takes control of your body. There is no treatment or cure.

NBIA Disorders
Assoc. is helping raise awareness, connecting families and researchers until a cure can be found.

For more information about NBIA log on to www.NBIAdisorders.org and for more information about my daughters journey, log on to www.queenbeeworld.com

The Great!

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

NBIA Disorders Assoc. has been the best resource for our family. After receiving my daughters diagnosis in 2006, we did not know what to do. The Assoc. helped us get in touch with other families to better understand how our daughters life was going to be affected and prepare us for a very difficult journey.

Ways to make it better...

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

It is a great organization that is in critical need of funding so that they can continue to raise awareness, fund research and help families.

More feedback...

Would you volunteer for this group again?

Definitely

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

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2011

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