SPONDYLITIS ASSOCIATION OF AMERICA
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November 21, 2011
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
June 27, 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!
June 25, 2011
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
June 21, 2011
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
June 20, 2011
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.
June 19, 2011
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
June 18, 2011
Since my diagnosis in 1997 I have learned so much about AS and it's treatments, symptoms, etc. It has been a tremendous resource to me and has introduced me to many others in the same situation. I will be a life long supporter.
The Great!
I've personally experienced the results of this organization in...
I've personally received a wealth of information and used it in my own life.
Ways to make it better...
If I had to make changes to this organization, I would...
If I had to make changes I would try to obtain more research funds and make more communities aware that AS exceeds.
June 17, 2011
I am 70 years old, and had my first AS symptoms at age 17. I was not correctly diagnosed until the age of 30. When I discovered SAA years later, it became a valuable resource. It provided up-to-date information, opportunities to link to others with AS, and opportunities to get involved in the quest for better treatments and hopefully a future cure. I am most excited about their support for research which gives me a chance to volunteer as a research subject. Major advancements in understanding AS are being made. New and improved medication options are available. If these options had been available earlier, I would not have to look at the ground when I walk because of my almost totally fused neck and spine. These options, however, have been vital in helping me continuine to lead an active and wonderful life with much less pain than I had 20 years ago. My use of pain medications is almost nil. It is the least in the past 50 years. I hope this trend continues. With the wonderful work our association, SAA, is doing , I am hopeful for a better future for all AS- afflicted individuals. Marvin Veselka, Austin, Texas
The Great!
I've personally experienced the results of this organization in...
learning how to live better with AS through their information services and seminars. Research of AS has resulted in advancements in knowledge and treatment options. These have helped me improve my life with AS.
Ways to make it better...
If I had to make changes to this organization, I would...
not change the mission, but widen their efforts in obtaining funds for research. It is difficult, and I don't have a suggestion for improving their great efforts,, but more funds for research is vital for a future without AS.
June 17, 2011
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.
The Great!
I've personally experienced the results of this organization in...
my family and others I have met with AS.
Ways to make it better...
If I had to make changes to this organization, I would...
not make any changes
June 16, 2011
I have A.S. and SAA has been a blessing. They have so much to offer and great information for anyone with this disease and even for the ones that help us daily with our issues. If not for our loved ones having access to this information I feel that we would be very misunderstood and relationships would suffer greater tragedies. This Organization has given me hope when I had none and the information I needed to get through another day. Without the Lord and this site I would be VERY VERY lost with my disease. Thank you SAA!!!!!!!!!!!!!!!!!!!
The Great!
I've personally experienced the results of this organization in...
Having Hope and information that I would otherwise not have. They have given me resources that I would have NEVER found and I would not have my "FAMILY" in my support group that I attend. Thank you Orange County A.S. support group. Karen you are the GREATEST!!!!!!!!!!!
Ways to make it better...
If I had to make changes to this organization, I would...
None that I have found so far.
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