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78 Reviews
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November 14, 2013

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November 14, 2013

I am biased - I have been a contributing member of SAA for 20 years and joined the staff 1 1/2 yrs ago. I have an MBA in non-profit management and have been honored to work at many amazing non-profits over the last 25 years. So, from an inside, outside and professional viewpoint, SAA is a truly wonderful organization. EVERYONE on the staff is professional, dedicated and knowledgeable. SAA stays focused on the mission with every decision - to be a leader in the quest to cure AS and related diseases and to empower those affected to live life to the fullest. 2.7 million people live with SpA. Yet it is often an invisible and lonely disease that does not get the attention & funding that other issues get. With a relatively small budget -all from donations- the staff and volunteers produce high quality programs and continuous support. SAA is behind the scenes everyday pushing for advancement in the search for cure and care for people living with SpA. In this age, with so much mis-information circulating, SAA is a beacon of correct information. It's such a blessing to be a part of this team. When people are diagnosed, it is the SAA that provides an opportunity to meet others with AS. It was & continues to be the SAA that provides the information needed to manage the disease.

Ways to make it better...

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

increase it's funding.

More feedback...

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

September 15, 2013

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September 15, 2013

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.

More feedback...

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

September 8, 2013

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2 previous reviews - show all
November 30, 2012

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

September 8, 2013

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

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?

2013

November 30, 2012

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

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?

2012

June 9, 2011

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

September 4, 2013

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1 previous review
July 13, 2013

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 ... more

September 4, 2013

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.

Ways to make it better...

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.

More feedback...

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

July 13, 2013

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.

More feedback...

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

September 3, 2013

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September 3, 2013

When my doctor told me that I probably has AS, I was mystified as to what that meant. All the information that I initially found told me that I would eventually turn into a bent over, stiff-spined, disabled victim. I am so grateful to SAA for all the current, thorough information that they offer. From their educational articles I learned that this didn't have to be my fate, and from their discussion forums, I got my questions answered by others with the same experiences that I had. The support and valuable conversations I have had there have changed my life, and now, 10 years later I am able to offer words of support to others. SAA is the best!

Ways to make it better...

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

Increase the educational marketing, to reach even more people and make others aware of this disease.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

September 3, 2013

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September 3, 2013

I love receiving information that will benefit me in my area. I enjoy finding others in my area that are like me and places my family can join me for support and learn more about my condition. I also love finding information about new medicines that I can review with my rhumeytologist.

More feedback...

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

September 3, 2013

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September 3, 2013

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.

Ways to make it better...

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

Have more patients get involved as volunteers & donate.

More feedback...

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

September 3, 2013

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September 3, 2013

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

Ways to make it better...

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

Increase their budget...

More feedback...

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

September 3, 2013

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September 3, 2013

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.

Ways to make it better...

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

change nothing

More feedback...

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

September 3, 2013
1 person found this review helpful

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September 3, 2013
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.

More feedback...

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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