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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.

June 9, 2011

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June 9, 2011

Thanks to the SAA, I and thousands of others have been able to learn more about our disease. In turn, we are better equipped to raise awareness of the disease to the general public, and also help our familes cope with this lifelong condition that can so greatly impact our lives. The Spondylitis Association of America has been my ONLY trusted source of continuous, accurate AS information and education. In addition, the SAA has been extremely important in my efforts as a support person for others with AS, as I use the SAA as a professional source that they can count on for accurate and tmely information about the disease. I have heard other AS clients say that feeling isolated s one of the most difficult issues they face when newly diagnosed. I agee with this. Had it not been for the presence of the SAA, I would have continued to feel alone and isolated with this disease. I've been an SAA member now for many years, and plan to be a member as long as I draw breath. The Spondylitis Association of America is truly worthy of being known as a great non-profit.

The Great!

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

all the ways I described above. I have used the SAA resources frequently--everything from the edicational seminars, research updates, peer to peer support, educatonal materials and awareness activites. I am far more educated, and have greater degree of comfort about Ankylosing Spondylitis via the Spondylitis Association of America than I did without this resource.

Ways to make it better...

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

provide more money to help it grow, and in turn, provide more research monies, educational opportunities and access to more people. I think the SAA would benefit from a domestic and international membership committee of everyday people living with AS. I believe this group could offer even more insights to living with AS and, in turn, provide ideas for how the SAA can grow and reach more people.

June 9, 2011

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June 9, 2011

My son was diagnosed with Ankylosing Spondylitis. In order to learn more about his condition, I did a an internet search and Spondylitis.org came up. It is the most comprehensive website offering everything from information, to support, resources, up-to-date studies, and directories. However, the message boards are most beneficial in my case. Connecting with people that are experiencing the same challenges or successes has been a godsend.

In addition, the Spondylitis.org newsletter, e-mail updates, and pamphlets are also very helpful.

I think as more awareness is brought to the autoimmune diseases in the Spondyloarthropathy category, Spondyltitis.org will serve as the go-to website for people that are searching for answers and for help.

The Great!

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

-

Ways to make it better...

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

-

June 9, 2011

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June 9, 2011

My doctor recommended SAA when I was first diagnosed. It has been my saving grace when I needed answers. This organization is there for information, support, and is incredibly important for everyone. On the days when you think this disease will beat you, all you have to do is hop on the message boards and you realize that you are not alone and everyone has bad days. Tomorrow might be a good day. Thank you SAA.

The Great!

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

This organization has helped in my life.

Ways to make it better...

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

I wouldn't.

June 8, 2011

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June 8, 2011

I was diagnosed with AS about 6 years ago. I scoured the web for information and came across SAA. The SAA has been an invaluable resource providing information about medications, exercise, and living with AS. Through the SAA I have learned about genetic research and other longitudinal studies into the disease, and also found out about how I can participate in the research. They also host seminars across the country that provide an opportunity to hear presentations from rheumatologists and therapists, and learn about the latest research and treatments. The SAA is there to support patients with AS and their families, and to spread knowledge about this disease to doctors to help with earlier diagnoses. It is a very worthwhile cause.

The Great!

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

It has helped me to deal with my disease and get back to a "normal" life.

Ways to make it better...

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

Find a way to help them get additional money from NIH to fund additional research.

June 8, 2011

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June 8, 2011

Five years ago I was diagnosed with Ankylosing Spondylitis and within a month joined SAA. I needed information, from definitions of "new" termonology, names of the current medictions available, the enormous research facts accurately presented, and I needed everything fast. They are there to help.

The SAA website quickly became my primary source for AS. As a volunteer for the charity for the last four years my respect and appreciation for SAA continues to grow. The educational materials available to the members (from podcasts, web presentations, free seminars, free support group meetings, and countless informative articles), allows us to empower ourselves. Its' richly dynamic and informative website allows me and countless other AS sufferers to be proactive in our lives. There is not any charity for AS that provides as much as SAA does to the members, volunteers and public. They stay true to their mission, they respect those diagnosed with Spondylitis and become a real friend by helping patients, physicians, caregivers and family members.

The Spondylitis Associaion of America is the best charity I have ever been privileged to know of and be associated with.

The Great!

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

my daily life. I am definitely better educated due to SAA, have a healthy outlook due to them, and I never feel alone anymore with this devastating disease since becoming a member.

Ways to make it better...

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

pray for a cure to AS and all spondyloarthropathies. I feel certain that SAA would pray for this change, too.

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

What one change could this group make that would improve your volunteer experience?

It is great the way it is now.

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

Has made me a better person overall. The new friends are a bonus.

How did this volunteer experience make you feel?

the experience continues to make me feel warm, needed and wanted.

When was your last experience with this nonprofit?

2011

May 21, 2011

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1 previous review
March 9, 2011

I was diagnosed with AS in 1985. Then, as now, the only organization focused exclusively on Spondylitis and its related diseases was the Spondylitis Association of America. I have watched it grow as... more

May 21, 2011

I've been a member of the SAA since the late 1980's. As a volunteer, I have known and worked side by side with many of the fine folks there, and have to say the Spondylitis Association is, hands down, the best and most trusted source of accurate information about Spondylitis and its related diseases that you can find anywhere online. Their support groups are a Godsend for so many people struggling with this disease. Their free seminars help people with AS learn how to better cope with this often devastating disease. And if that weren't enough, the SAA has been involved in every major advance in Spondylitis research over the last twenty-five years. The question is; Why would anyone with Ankylosing Spondylitis or one of its related diseases NOT become a member of this remarkable organization?

The Great!

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

too many ways to count.

Ways to make it better...

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

If I could change one thing, it would be to get more people with Spondylitis to join this organization.

March 9, 2011

I was diagnosed with AS in 1985. Then, as now, the only organization focused exclusively on Spondylitis and its related diseases was the Spondylitis Association of America. I have watched it grow as an organization for over 25 years, and am extremely proud to be a member. Their website is the gold standard for accurate, detailed Spondylitis information on the internet. In addition, the SAA has been involved in every major advance in Spondylitis research for the last quarter century. The staff, from Executive Director, Laurie Savage on down, are all excellent at their jobs, compassionate and well-versed in the intricacies of the disease. Their free educational patient seminars are a blessing, especially for the newly diagnosed, who often struggle to cope with this devastating disease. And finally, the SAA has been awarded a four star rating (their highest rating) from Charity Navigator. one of the most respected evaluators of non-profit organizations.

I support them with every bit of effort I can muster and with every breath I take.

The Great!

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

I have had the good fortune to work as an unpaid volunteer for this organization.

Ways to make it better...

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

If I had to make changes to the SAA, I would encourage them to grow faster and keep working to become an even more influential national organization.

May 17, 2011

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May 17, 2011

So much information, such great people to help.

Even my Dr. recommends SAA!

The Great!

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

...

Ways to make it better...

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

...

March 18, 2011

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March 18, 2011

The Spondylitis Association of America was the first association I found out about when I was looking for clear and trustable information about AS. I was diagnosed im 2008, and here in Brazil we don't have such an organized association that fight for AS patients rights. I had the oportunitty to speak with some people from the staff, and they were absolutely adorable with me! Thank you so much for all the information and help!

The Great!

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

learning more about my desease, and I am anxious to become a foreign member, so that I can receive all the books and the materials they have about AS.

Ways to make it better...

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

ask them to come to my country as well!

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