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78 Reviews
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September 3, 2013

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1 previous review
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... more

September 3, 2013

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.

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

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

July 15, 2013

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July 15, 2013

I absolutely LOVE the SAA. When I was first diagnosed I didn't know what A.S. was and had no one to talk to. I immediately found them on line, received support and signed up to help in any way I can.
I still check the forum page and learn new things each day about A.S. and related diseases.

They are ALWAYS willing to answer calls and emails too.
YAY!!!

Ways to make it better...

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

NONE

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?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

July 13, 2013

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July 13, 2013

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!

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

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July 13, 2013

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..........................

Ways to make it better...

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

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?

Quite well

When was your last experience with this nonprofit?

2013

July 10, 2013

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July 10, 2013

As a longtime employee of the Spondylitis Association, I may be biased in my opinion but I hear everyday the firsthand outpouring of gratitude from the people who turn to SAA for information, resources, support, and sometimes just someone to listen who understands what they're going through. Knowing that the organization is making a difference is a powerful motivator and all of us here are honored to do our part for the spondylitis community.

Ways to make it better...

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

Increase 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

December 30, 2012

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December 30, 2012

W H Y !... charities must stop funding the historical failure of animal research (youtube.com/ms4mulla1). B I L L I O N S of dollars every year prove the failure of animal research. a l s o, the TRUTH about polio by albert sabin, m.d., no LIE can live forever!... animal research has never been validated.

More feedback...

Will you volunteer or donate to this organization?

No

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

None

When was your last experience with this nonprofit?

2012

November 30, 2012

more


1 previous review
June 15, 2011

I have been able to participate in research on SA. My daughter was able to participate in a research project, she was able to receive aggressive treatment and when she moved out of state was able to l... more

November 30, 2012

Both my daughter and I have Ankylosing Spondylitis. They have been a fund of accurate information and support. I do not hesitate to recommend them and my wife and I support their ongoing work

More feedback...

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

Life-changing

When was your last experience with this nonprofit?

2012

June 15, 2011

I have been able to participate in research on SA. My daughter was able to participate in a research project, she was able to receive aggressive treatment and when she moved out of state was able to locate a specialist because of SAA.

The Great!

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

Yes

Ways to make it better...

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

None at this time

September 28, 2012

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September 28, 2012

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!

The Great!

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".

Ways to make it better...

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.

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?

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.

November 21, 2011

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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

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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!

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