Spondylitis Association of America

Rating: 4.85 stars   95 reviews

Address:

PO Box 5872 Sherman Oaks CA 91413 USA

Mission:

Our mission is to be a leader in the quest to cure AS and related diseases, and to empower those affected to live life to the fullest. There are more than 100 types of arthritis. For over 25 years, SAA has focused on just one - yours. So that no one has to face spondylitis alone.

Programs:

SAA provides public and patient education programs to facilitate early diagnosis, promote effective treatment, and encourage self-help care for optimal quality of life. 

SAA’s website, www.spondylitis.org, is updated regularly with the latest news and information about spondylitis treatment, medications and research. In addition, information about SAA events and seminars, supportive programs and the online Message Board community can also be found here.

SAA hosts free educational seminars in different metropolitan areas throughout the United States each year. All seminars include an experienced rheumatologist who provides an overview of spondyloarthritis along with current medications and other available treatments. Secondary speakers complement the program with presentations on other topics of interest including exercise, physical therapy, occupational therapy, the emotional impact of living with spondylitis, etc. These seminars provide an opportunity for attendees to ask questions and meet other people from the area impacted by spondylitis.

SAA offers free online seminar events, referred to as webinars. These webinars allow people to learn about specific spondylitis-related topics in the comfort of their home without having to travel. SAA hosts approximately 3 webinars each year; the live event is free and open to everyone in the spondylitis community. 

SAA provides a library of audio interviews (podcasts) to SAA members, which include questions posed to spondylitis experts to provide information on a wide range of topics including spondylitis symptoms, medications, treatment, complications, etc. Members are also asked to submit their own questions to be answered during future podcasts.

2015 Top-Rated Nonprofit
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More Info

(800) 777 - 8189
http://www.spondylitis.org

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Reviews for Spondylitis Association of America

Rating: 5 stars  

I have been diagnosed AS here in Italy but wasn't given many information, especially as far as the entheropatic form is concerned.
The SAA website was a happy discovery and I decided to become a member, not only to support it but also to keep updated with the latest discoveries. I love the webinars.

 
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Rating: 5 stars  

1 person found this review helpful

I absolutely love the SAA. They have been such an amazing resource and source of support for my family and I during this very challenging adjustment to life with Ankylosing Spondylitis.

 
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Rating: 5 stars  

1 person found this review helpful

When I was diagnosed with ankylosing spondylitis I knew nothing about what I was facing. The sources that I found on th Internet was more scary than helpful, some with bad information. SAA filled the information gap left by my doctor for me with scientifically grounded info, videos, and newsletters. My favorite part was their collection of stories. Whenever I feel alone in this fight, I go back to the stories and know that I have a team behind me.

 
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Rating: 5 stars  

1 person found this review helpful

They have given me valuable information about my illness.

 
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Rating: 5 stars  

1 person found this review helpful

When I was diagnosed with Spondylitis, the Spondylitis Association of America was my go-to spot to learn more. I refer to their website frequently, subscribe to their Spondylitis Plus magazine, and participate in their online support forums. Their staff is always friendly and helpful. They support research and have made a real difference in people's lives.

 
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Rating: 5 stars  

2 people found this review helpful

When I was diagnosed with ankylosing spondylitis in 1990, I felt totally alone. My brother also had it, but he lived in another state. I met a fellow AS sufferer at an Arthritis Foundation aquatics center. She gave me old copies of the Spondylitis Association's newsletter. I will be forever grateful to her. I joined the association that year and have been a member ever since. I have attended SAA educational forums in two states, attended support group meetings, participated in the online message board, and promoted SAA at health fairs in my state where I also represent the Arthritis Foundation. One of the most important ways the SAA has helped me was by printing an article in its newsletter by a rheumatologist in my home state. When I moved back home, I looked up that rheumatologist's office, and even though he had retired, I was able to find my new rheumatologist at his old office. That doctor is still my rheumatologist 13 years later. I know that I can count on the SAA to put the money it receives to good use: investing in research, sponsoring educational forums, and providing the information AS patients and their families need to know.

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

 
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Rating: 5 stars  

1 person found this review helpful

When I first started becoming symptomatic, it was very difficult the the medical community to diagnose me. I went to several different doctors, then to specialists. Finally, with a preliminary diagnosis from the Mayo Clinic, then confirmation from UCSF, I had some homework to do. There was only one place that clearly explained to me what I was dealing with and provided needed resources, knowledge and connections with others who suffer this debilitating disease. That would be the Spondylitis Association of America. Not only was I able to educated myself about this disease, but also was able to direct members of the medical community to the Spondylitis Association of America. It's wonderful to know that this resource is out there for me and others. I'd be lost without it. I just wish the public at large were more aware. Explaining it is sometimes a bit overwhelming.

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

There is nothing that I can think of. They are doing the very best with the resources that they have.

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

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

When I first first diagnosed with AS, this was the first place I went to for information (as suggested by my doctor, who is one of the foremost authorities on the subject). I was completely lost and really felt quite "alone", even though I have an amazing support system and the availability of superb medical care. I gained a great deal of extremely helpful information Spondylitis Association of America. Their continued support and up-to-date information on latest treatments, etc. is invaluable. i would likely be much more in the dark and alone had it not been for this association. I also have been able to share and support other sufferers through this association. It's reassuring to know that we are not alone, and that there are PEOPLE in an organization who really care. Thank you to all of the people of Spondylitis Association of America.

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

 
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Rating: 5 stars  

1 person found this review helpful

Since like many with various forms of Spondylarthritis who are served by this mostly volunteer group, I got very sick years BEFORE I met the diagnostic criteria of Dr.s. So their information was hugely helpful when Dr.s used long words and talked to me about blood tests & XRays. Over the years I've been to several seminars this organization has run for patients to share information, to encourage the right kind of exercise, to answer questions. They've also been active in getting the word to first responders in our various communities how we should be intubated without damaging our vulnerable stiff necks. With only a few paid employees, this largely volunteer organization has greatly served a large group of patients and their families.

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

Have more patients get involved as volunteers & donate.

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

 
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Rating: 5 stars  

My AS journey started sixty years ago with chronic hip-back-neck pain with frequent flare-ups. For forty years the DX and treatment plan was whatever was popular in the rheumatological community at that point in time. AS was never mentioned in that forty years, and I received little or no relief. Twenty years ago I took charge, and started reading which lead me to SAA which quickly became my primary source for information.

My personal DX was AS, and my treatment plan revolved around a healthy diet, daily exercise and a positive attitude. Fifteen years ago my DX was confirmed by two rheumatologists, but my treatment plan was rejected by my doctors. To date I have never taken a RX drug for my AS and, I continue to eat a healthy diet, exercise daily and my AS mantra is "pain is certain, suffering is optional."

I am grateful to SAA with special kudos to their staff and volunteers. SAA is still my go-to source for AS information, and I wish them continued growth and success in meeting their mission statement and goals. What SAA does is making a positive difference in the lives of many people with physical and emotional pain. What better calling in life could anyone ask for?

Namaste, Russ McDonald

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

Increase their budget...

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

 
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Rating: 5 stars  

1 person found this review helpful

I have spondyloarthritis and Ehler's Danlos(EDS) Hypermobility. I was diagnosed with Ehler's Danlos in January 2013 (after years of pain) and spondyloarthritis (for sure Axial spondyloarthritis (AxSpA)) with possible ankylosing spondylitis June 2013. While I have been getting worse for a number of years, this past year progression has been more rapid. I am grateful to find a rheumatologist that does listened and realized EDS/hypermobility does not explain all my symptoms and to make matters worse, I do not know much family history (and cannot obtain). Once diagnosed with spondyloarthritis, I had never heard of it an was directed by rhuematologist to rheumatology.org to for more information. This gave me little information, and I was thrilled to find SPONDYLITIS ASSOCIATION OF AMERICA, it provided so much information! Once I showed my husband he said join, they are helpful. This is significant considering our current financial issues (I have been out due to pain, & orthostatic intolerance since June, my husband is looking for work but laid off 10 months ago. We try to conserve money as much as possible as we are broaching bankruptcy, foreclosure, & looking medical insurance; yet both agree information obtained from SPONDYLITIS ASSOCIATION OF AMERICA: made cost of joining invaluable. Thank you for helping me understand spondylitis & not feeling alone.

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

change nothing

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

 
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