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78 Reviews
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June 25, 2011

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June 25, 2011

Not very many people know about Spondylitis. SAA is a remarkable organization because they step in and effectively fill a void. They get much needed information out to their community, they also campaign on behalf of patients. They raise awareness, and bring peace of mind to patients. I've always trusted the information I've received from SAA. I've also enjoyed the events they organize. They have well exceeded my expectations.

The Great!

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

They keep me up to date on medical research, related legal issues, and encouraging personal stories.

Ways to make it better...

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

none

June 21, 2011

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June 21, 2011

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.

The Great!

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

The care and health for my daughter.

Ways to make it better...

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

None

June 20, 2011

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June 20, 2011

SAA has been an absolute godsend. I suffered with symptoms since the age of 14 but was not diagnosed until the age of 42. SAA keeps me on the cutting edge of treatment and brings a whole community to my door. It wasn't that long ago that people thought AS was a death sentence. SAA makes me proud and gives me encouragement.

The Great!

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

The literature alone is informative enough to share with my doctors and dentist. i have used SAA as a resource for finding treating physicians.

Ways to make it better...

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

Let more people know. I have SAA on my facebook.

June 19, 2011

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June 19, 2011

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.

The Great!

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.

Ways to make it better...

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

None. They are doing great work.

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?

2011

June 18, 2011

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June 18, 2011

Since my diagnosis in 1997 I have learned so much about AS and it's treatments, symptoms, etc. It has been a tremendous resource to me and has introduced me to many others in the same situation. I will be a life long supporter.

The Great!

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

I've personally received a wealth of information and used it in my own life.

Ways to make it better...

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

If I had to make changes I would try to obtain more research funds and make more communities aware that AS exceeds.

June 17, 2011

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June 17, 2011

I am 70 years old, and had my first AS symptoms at age 17. I was not correctly diagnosed until the age of 30. When I discovered SAA years later, it became a valuable resource. It provided up-to-date information, opportunities to link to others with AS, and opportunities to get involved in the quest for better treatments and hopefully a future cure. I am most excited about their support for research which gives me a chance to volunteer as a research subject. Major advancements in understanding AS are being made. New and improved medication options are available. If these options had been available earlier, I would not have to look at the ground when I walk because of my almost totally fused neck and spine. These options, however, have been vital in helping me continuine to lead an active and wonderful life with much less pain than I had 20 years ago. My use of pain medications is almost nil. It is the least in the past 50 years. I hope this trend continues. With the wonderful work our association, SAA, is doing , I am hopeful for a better future for all AS- afflicted individuals. Marvin Veselka, Austin, Texas

The Great!

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

learning how to live better with AS through their information services and seminars. Research of AS has resulted in advancements in knowledge and treatment options. These have helped me improve my life with AS.

Ways to make it better...

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

not change the mission, but widen their efforts in obtaining funds for research. It is difficult, and I don't have a suggestion for improving their great efforts,, but more funds for research is vital for a future without AS.

June 16, 2011

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June 16, 2011

I have A.S. and SAA has been a blessing. They have so much to offer and great information for anyone with this disease and even for the ones that help us daily with our issues. If not for our loved ones having access to this information I feel that we would be very misunderstood and relationships would suffer greater tragedies. This Organization has given me hope when I had none and the information I needed to get through another day. Without the Lord and this site I would be VERY VERY lost with my disease. Thank you SAA!!!!!!!!!!!!!!!!!!!

The Great!

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

Having Hope and information that I would otherwise not have. They have given me resources that I would have NEVER found and I would not have my "FAMILY" in my support group that I attend. Thank you Orange County A.S. support group. Karen you are the GREATEST!!!!!!!!!!!

Ways to make it better...

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

None that I have found so far.

June 16, 2011

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June 16, 2011

I have two children with spondylitis and the Spondylitis Association of America is invaluable in giving me information on how to deal with their disease and ways to help them have a more normal life. They have exercises to help them keep limber, they give me the the latest research information, and keep up updated on what is going on!

The Great!

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

Their newsletter, and their research updates.

Ways to make it better...

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

not make any changes

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

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