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78 Reviews
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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.

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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

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.

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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

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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

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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

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 16, 2011

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June 16, 2011

My indentical twin sister has AS, and I'm very glad that she has an organization such as this to turn to. It is a relatively unknown diease that most people don't even know exists. This organization not only provides her with info and advice, but allows her friends and family the benefit of info, as well.

The Great!

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

NA

Ways to make it better...

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

Would be known to many others

June 16, 2011

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June 16, 2011

My husband was diagnosed with AS in 1980. At that time there was no organization specifically for AS patients. Sometime after his diagnosis his doctor, Dr. Rodney Bluestone's office invited my husband and myself to a meeting with other AS patients, families, friends, spouses, etc., in Beverly Hills. Yes, my husband (now deceased) and myself were at the very first meeting with a group that has become the Spondylitis Association of America. We were among the first 35 people to join the ASA as SAA was first known.

It was my desire to have ASA/SAA provide support to AS patients and families more on a social level. Thank goodness Jane Brukel had the wisdom and vision to bring SAA through to the organization it has become.

Jane saw SAA as a vehicle to initiate and promote research for the cause and cure of AS. I did not have vision and did not believe this was possible. Again, thank goodness Jane did. So much of the research that has been done over the past 20 - 25 years has been because of Jane's vision and the very fact that SAA was an organization. There was a time when the Rhumetologists were having a convention and one researcher developed a rat that had AS! The researcher developed the rat because of SAA! Imagine that, prior to his develpment of the rat there was no animal, save man that had AS. With his development of the rat, the medical and research community had a lab animal with which to study AS.

I cannot tell you how I came to hate trying to define the "MIssion Statement," not understanding what it would do for the organization. But even though my vision for the organization differed from Jane's my husband and I served on the Board as directors for many years, and I served as VP of the Los Angeles Chapter when it seemed as though having chapters through out the US would be the direction to take ASA/SAA.

We tried many things in the early days, but mostly we tried to help each other, to educate doctors and the general public about AS.

As it turned out all those hours we put in, and meetings and seminars that we attended all helped SAA become the organization it is today. A wonderful source of information for patients, a driving force for research, a forum for patients, a wealth of knowledge to share with patients, family and friends.

Having seen the organization from day one, knowing the struggles, and sacrifices of all involved, I am proud to say, I was there and stood up and was counted in the fight.

I cannot think of a more deserving organization that SAA for this recognition.

Thank you for allowing me to share my story and voice my opnion.

The Great!

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

The membership grew from 35 to well over 4,000. A board of medical directors was formed, the organization obtained a 1.5 million dollar grant for research, a rat that had AS was develped, and the organization authored a book for exercise that it rated number one for AS patients. A video for water exercise was developed and made available. A newsletter was started that has become a prestigious publication. But most importantly, SAA has provided hope for all those who have SA.

Ways to make it better...

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

Donate a million dollars, if I had the money, I am so sorry I have never won the lottery to have been able to do this.

More feedback...

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

How did you learn about this organization?

Through my husband's doctor, Dr. Rodney Bluestone. We attended a meeting that started the organization.

When was your last experience with this nonprofit?

2011

June 15, 2011

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June 15, 2011

SAA gave me so much support and resources when none could. Not just for me but for my loved ones too. They give me a lot to look forward to and connected me with other like me, they also had a hand in providing me with great care with the top doctors in the field. They were there when I needed them most and they continue to be there for all that are suffering with this disease.

I didn't know much about this disease when I was first diagnosed and it scared the heck out of me, and like most with an illness I sought answers. I eventually became unable to work, therefor loosing the only resources I knew of at the time making it that much more difficult in dealing with this disease. But just when I was starting to give up I found SAA or I should say it found me, and they gave me hope, then they gave me support, then they gave me the resources to cope.

I can honestly say they are the best nonprofit around, their dedication never ceases to amaze me, and their compassion is unbeatable, they truly care and will take care.

The Great!

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

My experiences with this organization have brought many happy tears. They are patient, kind, and helpful in so many ways.

Ways to make it better...

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

I really could not say of any changes that they are not already doing could be made, except hold more entertainment / educational events ;) but I'm sure they are working on it as more funds come in.

June 15, 2011

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June 15, 2011

When I was diagnosed with Spondylitis I had never heard of it and had know idea where to find reliable information.

That is why I was glad that my search led me to SSA. Their website has so much information in one place, so I don't have to spend pressure hours searching it down. They
also keep me apprised weekly of new information on the disease, as well as send updates on new studies that have been started or old studies that have made progress.

They are very deserving of all the support of America, because you never know when you or someone you love will be diagnosed.

The Great!

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

My experience so far has been the wealth of knowledge I have been able to put my fingers on. It is important to educated in your own health issues and they help me achieve that knowledge.

Ways to make it better...

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

Update the information on general spondylitis that doesn't fit into one of the specific categories. This is the most confusing type of spondylitis to have, and to know that it is a real thing with real symptoms would be most comforting. I believe that their site still states that some doctors don't believe that it even exists, in the words of my own doctor, "If a doctor believes it doesn't exist, that doctor isn't a Rheumatologist.

June 11, 2011

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June 11, 2011

With 2.4 million people suffering from spondylitis, we NEED a place like SAA that can help spread knowledge and awareness of this terrible disease. I AM one in those 2.4 million and am so thankful to have found a place to gain more knowledge of this "not so known" disease and connect with those who share in "my pain". SAA is a great organization that I'm proud to be a part of. I thank them for all they have done and continue to do!

The Great!

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

They have helped me if I have questions about my disease. They've also sent me information that I can share with others.

Ways to make it better...

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

do nothing--they are right on track!

June 9, 2011

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June 9, 2011

I was diagnosed with AS 20 years ago. I have been a member of SAA for about 10 years. I have been a volunteer leader of a support group in the past, have attended regional conferences and read the newsletter religiously. I have been amazed at the progress and change this organization has been able to affect. They are a wondeful resource for patients, do an amazing job educating the public, the government and physiscians, and the staff is the most caring and accessible group I have been involved with. I believe in what they do and how they do it!

The Great!

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

The advocacy for AS patients and the dramatic progress the medical field has made for early diagnosis and treatment of AS.

Ways to make it better...

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

I am not really sure what changes would be effective.

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