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

I suffer from AS and benefit greatly from the work of SAA. I also donate because of how effective they are.

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?

2013

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1 previous review
Rating: 5 stars  

1 person found this review helpful

For people afflicted with Spondylitis, SAA is a great source of knowledge and community, as well as funding research into causes and treatments.

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

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

1 person found this review helpful

SAA has been very useful tome, filling a gap that docs don't have time for. I'm happy to support them.

I've personally experienced the results of this organization in...

Learning about new treatments, studies, meds. Their podcasts and discussion forums are very helpful.

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

More podcasts

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Rating: 5 stars  

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.

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.....

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

None needed!

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Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

The care and health for my daughter.

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

None

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Rating: 5 stars  

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.

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.

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

None. They are doing great work.

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

Was this review helpful? 
Rating: 5 stars  

My now deceased father had AS and now my identical twin daughters have AS. I have found SAA an invaluable source of information and inspiration, both for understanding the disease and for learning how my daughters can live with it. Many thanks to SAA for being there for me and for my family!

I've personally experienced the results of this organization in...

understanding the treatments available to AS patients. My daughters have also accessed the SAA sites and have been able to understand how others of their age are coping.

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

In my perfect world, there would be an SAA group near where I live, which is in Vancouver Canada.

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Rating: 5 stars  

The SAA provides valuable research and drives awareness of a terrible disease that afflicts millions of North Americans every year.

I've personally experienced the results of this organization in...

the healthcare that I receive from my fantastic doctor who is able to connect with other doctors to share learnings through the SAA

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

n/a

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Rating: 5 stars  

SAA provides great educational sessions free of charge to persons affectd by SAA and offerings are planned in different areas of the country so that many can take part in those sessions. The learning from speakers and other attendees has been invaluable. I've developed friendships and contacts from attending sessions that have continued for several years and would not have been possible without SAA.

I've personally experienced the results of this organization in...

Information provided through their website, chat rooms and education sessions. Learned of advances in SAA research that has resulted from SAA financial and participantion.

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

Create more regional opportunities for involvement and education.

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Rating: 5 stars  

As a disabled Veteran who is partially crippled and always having to deal with pain that was mis-diagnosed for over 20 years. . I myself who was finally diagnosed by one of the best MD's at age 39. I had to close a business which i loved but could no longer endure the pain with the Arthritis without some real hard drugs from the Doctor. Well, i got some relief but the hard drugs were destroying my life. I went through a divorce after almost 10 years of marriage. I lost everything in the courts and I was at my lowest point i think in my life at the time. My sister (Lori) who works with the Cancer Society herself became a victim last year. She is doing well now after the chemo and is considered a survivor. In 1999, she had heard about this small group for Anklyosing Spondylitis and paid for my first year as a small gift to me for my Birthday. I think it was one of the best Birthday presents i have ever received. I have gotten to know others on the internet and even submitted my story of years (16) of mis-diagnoses from Doctors who just didn't know any better. Becoming a member with SAA it helped me to start to understand what was happening to my body. I found some friends here that understood what i have been up against for most of my adult life. I consider myself to be a life long member and consider this a great way to help others who have been through the tough times as well. Now i understand to feel better that i have to deal with the pain and depression that all of us Spondy's endure everyday of our lives. Most spondy's will tell you It keeps most of us single and our friends at a distance so this website is something that helps fill the gap especially on some of our most painful days when an understanding friend just to talk with when you are hurting can make all the difference in the world. Thank You SAA and keep up the great work keeping all of us Spondy's up to date.

I've personally experienced the results of this organization in...

Some great Spondy's and understanding people here

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

I would like to have more social meetings with other Spondy's.

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Rating: 5 stars  

I was diagnosed with AS about 10 years ago, when I was 29 years old. Soon after I found SAA online and became a member. I can't tell you how much their website and quarterly magazine have helped me over these past 10 years, not only with great articles, forums, and exercises, but SAA has given me real hope that one day there will be a cure for AS. It always lifts my spirits when I get their latest quarterly in the mail. They cover such a wide range of topics in their magazine, and it always leaves me feeling hopeful. I always look forward to reading it when it arrives in my mailbox, and I always learn something new and they are always working towards a cure. SAA also has events where you can meet other people with AS. I think anyone with AS or even someone with a friend or loved one who has AS can benefit from this incredible organization.

I've personally experienced the results of this organization in...

SAA has given me hope that there will be a cure for AS.

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

I don't think that I would change anything about SAA.

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Rating: 5 stars  

I've been pleased with the materials and responsiveness of SAA.

I've personally experienced the results of this organization in...

Receiving collateral material

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

Mount a more involved charitable campaign

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