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June 23, 2010


June 23, 2010

The WDA has been awesome in term of information, support, and raising awareness for this very common but severely misunderstood disease.

The Great!

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

I've been personally lucky enough to benefit from support both with information and with emotional support when I need it. The fundraising they'v done for awareness, research, and recently, the creation of a new cheap OTC med have been amazing efforts.

Ways to make it better...

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

Try and create international branches... but for now the money is being put where it needs to go and going international could do much more damage than good.

More feedback...

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

the fact that I don't have to feel like I'm a hypochondriac or crazy or looking for attention; these people genuinely understand the situation and are striving to remedy it.

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

Wonderful. They not only keep up the good work they do but they also keep tabs on the people who are part of the society and see how we're all doing whenever they can.

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

Raise the awareness level around the world through the medical system; make medications more available to people... Create support groups wordwide; hold more symposiums and go international.

Ways to make it better...

I have only had one bad experience, and that was when a fellow member found me after reading a post I wrote and started pressing me for very personal medical information, like my cerruloplasm level. He had "intuitively" diagnosed himself and was too nosy.

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

The lack of awareness about this disease and the fact that it isn't one of the "trendy" diseases out there makes it difficult for them to fundraise or create better awareness.

One thing I'd also say is that...

That I'm glad I found the WDA because now there are a group of people who understand that I'm not looking for attention and I'm not a hypochondriac, and that they also know what it's like to lose certain abilities like how to speak their own language....

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?


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