My Nonprofit Reviews

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

littlestro

233 profile views
1 reviews

Review for APS Foundation of America, Inc., La Crosse, WI, USA

Rating: 5 stars  

I was diagnosed with APS in 2002. I had never heard of APS until then.
I started searching for information, the library, the internet. I began to understand what I had but found no one else with this disease.
Frustrated I searched the web looking for anyone who could understand and help me.
Finally I came across the APS web site and learned that a few more people had this disease. APS has given me the support I need to go on. It has offered information on drugs, genetic research, and treatments for APS. It has helped my family understand the disease. I don't feel alone anymore!

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

Dealing with family and friends. I reccommend it to everyone I meet. It helps others understand the disease

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

See that more advertising would be done. Most people (including some doctors) know very little about APS. TV campaign: 6 minutes, some health programs (Dr. OZ)

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Quite well

How did you find this group?

the internet

When was your last experience with this nonprofit?

2011

Role:  Client Served & I reached out to others with APS.
apsfa (Nonprofit Staff) wrote:

Thank you so much for the review. We are glad we have been able to help you. We have been trying to get more media attention. It has gotten better. We have been on Mystery Diagnosis & House. The Mystery Diagnosis Segment is available on iTunes here: http://bit.ly/ViCpw APS has been mentioned in passing by Dr. Oz. We have been sending letters to shows to get a response. We have more media picking up stories about people and running them in their local papers. Tina has done a 45 minute interview with a radio station outside of DC with the help of an employee there who also has APS. You may be interested in this page: http://www.apsfa.org/media.htm Now, it is just time and money and help from you the volunteers & clients to push the media to run a story on it. Together we all can get this in the media!