My Nonprofit Reviews
Marilyn M.
Review for Spondylitis Association of America, Encino, CA, USA
I was diagnosed with AS 23 years ago. This organization has been a lifeline to inform and validate me. Our family has taken part in the research. This research is groundbreaking. Over the years it has helped me to bring information to doctors I am dealing with. It has explained to me why I have symptoms that would seem to be totally unrelated to AS.
Early on there was a conference in Minneapolis and it was so great to see others there and to get information. I know that these conferences continue to be presented around the country. This small but powerful organization has been a godsend to me.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2013
Review for Spondylitis Association of America, Encino, CA, USA
My sister, my brother and I have all been diagnosed with AS. My sister was the first diagnosed. Thank heavens! because with my unusual symptoms (severe stomach pain) it wouid not have been diagnosed until much later. She was able to tell me about the symptoms due to the articles and research that was being done. We went to a day long conference when it was in Minneapolis and it was so helpful to be with others. Over the years this has grown from a little organization into a recognized leader in the field. We have participated in the family research. I have been able to tell other folks I have met about the newsletter. I continue to get the newsletter, even though my symptoms are much milder than many people, because I am constantly learning about the variety of symptoms and treatments. I am immensely grateful for the support.
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I've personally experienced the results of this organization in...
my family and others I have met with AS.
If I had to make changes to this organization, I would...
not make any changes