Spondylitis Association Of America

Rating: 4.87 stars   78 reviews

Issues: Health

Location: 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.

2013 Top-Rated Nonprofit
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EIN 95-3890767
(800) 777 - 8189
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Community Reviews

Rating: 5 stars  

1 person 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

Was this review helpful? 
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  

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

Was this review helpful? 
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  

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

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

The Spondylitis Association of America is the ONLY nonprofit organization that is dedicated to helping people diagnosed with Ankylosing Spondylitis. They not only help patients, but they work with the doctors that are researching this disease and treating patients. They advocate for health care knowledge by providing informative materials, magazines, educational events available in person or as a webinar. They strive to reach out to people in as many ways as possible.

One thing that I find particularly impressive is the personal contact. Every year when I make my annual donation, I get a thank you letter personally signed by the Executive Director Laurie Savage. I also get a phone call to thank me. Those personal touches mean a lot to me.

This is the organization to go to whether you are newly diagnosed or have been living with AS for decades.

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?

Very Well

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

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.

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

Was this review helpful? 
1 previous review
Rating: 5 stars  

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.

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

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Rating: 5 stars  

I'm newly diagnosed, and the Spondylitis Association of America, through their educational materials, has helped me understand this condition so much. It has taken the fear out of my condition just by helping me to understand what is happening to my body. I could never thank them enough!

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

Was this review helpful? 
Rating: 5 stars  

I was diagnosed with AS at 26 and didn't think much of it as I was placed on a high dose of anti-inflammatory meds. But at age 45 when Crohn's disease prevented me from taking NSAIDS a wall of pain knocked me down........an unbelievable disabling condition! Living in Nebraska I felt isolated and alone in my condition. Spondylitis Association of America helped to educate me, my friends, and some of my care providers. I could not be more appreciative of this group, and hope awareness of this disabling condition continues to grow through them and their work..........................

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

encourage more donations to start a national campaign of awareness about the way this disease effects people, it is truly the invisible illness

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?

Quite well

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

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!

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".

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.

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.

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