My Nonprofit Reviews

rene2 - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

rene2

452 profile views
1 reviews

Review for Wilson Disease Association, Milwaukee, WI, USA

Rating: 5 stars  

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

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?

2010

Role:  General Member of the Public & I have Wilson's disease and try to raise awareness for this group...