SPONDYLITIS ASSOCIATION OF AMERICA
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W H Y !... charities must stop funding the historical failure of animal research (youtube.com/ms4mulla1). B I L L I O N S of dollars every year prove the failure of animal research. a l s o, the TRUTH about polio by albert sabin, m.d., no LIE can live forever!... animal research has never been validated.
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Will you volunteer or donate to this organization?
No
How much of an impact do you think this organization has?
None
When was your last experience with this nonprofit?
2012
For people afflicted with Spondylitis, SAA is a great source of knowledge and community, as well as funding research into causes and treatments.
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Was your donation impactful?
Definitely
How likely is it that you would recommend that a friend donate to this group?
Definitely
How likely are you to donate to this group again?
Definitely
When was your last experience with this nonprofit?
2012
SAA has been very useful tome, filling a gap that docs don't have time for. I'm happy to support them.
The Great!
I've personally experienced the results of this organization in...
Learning about new treatments, studies, meds. Their podcasts and discussion forums are very helpful.
Ways to make it better...
If I had to make changes to this organization, I would...
More podcasts
Both my daughter and I have Ankylosing Spondylitis. They have been a fund of accurate information and support. I do not hesitate to recommend them and my wife and I support their ongoing work
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How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
I have been able to participate in research on SA. My daughter was able to participate in a research project, she was able to receive aggressive treatment and when she moved out of state was able to locate a specialist because of SAA.
The Great!
I've personally experienced the results of this organization in...
Yes
Ways to make it better...
If I had to make changes to this organization, I would...
None at this time
When I was diagnosed in 2007 I had no idea what Ankylosing Spondylitis was. I had never heard of it and was scared to say the least. I started searching for information and thankfully I found SAA. They provided up to date info which I couldn't find anywhere else. I also found support from people who understand how I was feeling. I've read everything they've put out since and will continue to support SAA. Thank you for all you do!
The Great!
I've personally experienced the results of this organization in...
You provided the medical information I needed to show my doctors other things I was experiencing were related to AS. It could have saved my life when it came to my heart problems. Not to mention you give me some sanity knowing "it's not all in my head".
Ways to make it better...
If I had to make changes to this organization, I would...
Produce some patient to patient symptoms list. I know it's on the message boards but I think if we could get a short list out there it could help a lot I see asking the same questions over and over. Also many of us our pushing for exercise in AS'ers and we'd love to have some tracking forms for this. Showing it's ok to feel some pain and the ways you see your body responding to the exercise for encouragement. I see other arthritis sights have these but they don't always cross over to AS easily.
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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?
2012
How did you find this group?
online search
What, if any, change in your life has this group encouraged?
Me to realize the docs may have best interest at heart but they don't know a lot when it comes to AS. I need to be my own advocate and they help me gain the knowledge I need to do this.
SAA has been wonderful in all aspects of my having AS. The organization mailed me a FREE ice-chest with ice packs inside for travel purposes, a FREE container to dispose of my injection (Enbrel) syringes, many FREE pamphlets and brochures. SAA also assisted me in obtaining financial relief for the cost of Enbrel. I have supported SAA with financial contributions, albeit small donations at times as my finances are tight. The toll-free phone assistance is PRICELESS as there is ALWAYS someone there to answer questions and have a person there to help me through emotionally rough times. SAA is a God-send!!!!
The Great!
I've personally experienced the results of this organization in...
Exercise tips, emotional and financial support.
Ways to make it better...
If I had to make changes to this organization, I would...
Ask as many people in the USA and the other financially stable countries on Earth to donate as much financial aid to the cause of fighting this disease through donations to SAA!
More feedback...
Will you volunteer or donate to this organization?
Likely
How much of an impact do you think this organization has?
Life-changing
How did you learn about this organization?
My doctor.
When was your last experience with this nonprofit?
2011
As one who has Ankylosing Spondylitis, I have benefited greatly from information obtained from SAA's web site and other publications. They provide helpful practical advice for people dealing with this family of diseases, which affect a surprisingly high number of people.
The Great!
I've personally experienced the results of this organization in...
...terms of helpful advice from both others suffering from this disease, and expert professionals on their advisory board.....
Ways to make it better...
If I had to make changes to this organization, I would...
None needed!
Not very many people know about Spondylitis. SAA is a remarkable organization because they step in and effectively fill a void. They get much needed information out to their community, they also campaign on behalf of patients. They raise awareness, and bring peace of mind to patients. I've always trusted the information I've received from SAA. I've also enjoyed the events they organize. They have well exceeded my expectations.
The Great!
I've personally experienced the results of this organization in...
They keep me up to date on medical research, related legal issues, and encouraging personal stories.
Ways to make it better...
If I had to make changes to this organization, I would...
none
My daughter has been diagnosed with spondyloarthritis for about one year now. The support that we have received from SAA has helped us feel not so alone. I have a different autoimmune disease and there is no national support group for my specific disease. The SAA, which deals specifically with the cluster of spondylitis disorders, has been a great and thorough resource of disease information, but more importantly for my daughter, the SAA has provided the forum and opportunity to network with others, including health care providers to get her the best comprehensive care.
The Great!
I've personally experienced the results of this organization in...
The care and health for my daughter.
Ways to make it better...
If I had to make changes to this organization, I would...
None
SAA has been an absolute godsend. I suffered with symptoms since the age of 14 but was not diagnosed until the age of 42. SAA keeps me on the cutting edge of treatment and brings a whole community to my door. It wasn't that long ago that people thought AS was a death sentence. SAA makes me proud and gives me encouragement.
The Great!
I've personally experienced the results of this organization in...
The literature alone is informative enough to share with my doctors and dentist. i have used SAA as a resource for finding treating physicians.
Ways to make it better...
If I had to make changes to this organization, I would...
Let more people know. I have SAA on my facebook.
After going to a chiropractor for many years, and my pain, and stiffness getting worse, I finally went to a doctor who diagnosed my symptoms as ankylosing spondylitis in 1992. Because my condition went untreated for many years, and even worse, because I went to a chiropractor who had no idea what he was doing, nor ever heard of my condition, for over 10 years I had a very difficult time managing my illness. Thank God, now, after many difficult years, I am better able to manage my condition. I credit, in large part, SAA for helping me manage, and deal with my disease. Their information, and helpful suggestions, have been a vital part of my care. I am fully comitted to this organization, and greatly encourage everyone to support this vital cause, and hopefully, someday, with their help, this dreadful illness will be curred, and not hurt anyone else. In the meantime, this wonderful organization adds tremendous knowledge to the world, who before their vital work, had vey little information about this illness.
The Great!
I've personally experienced the results of this organization in...
See above. Their assistance, and knowledge has greatly assisted me in caring/dealing with my condition.
Ways to make it better...
If I had to make changes to this organization, I would...
None. They are doing great work.
More feedback...
Was your donation impactful?
Definitely
How likely is it that you would recommend that a friend donate to this group?
Definitely
How likely are you to donate to this group again?
Definitely
When was your last experience with this nonprofit?
2011
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