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March 12, 2011

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March 12, 2011

SAA rocks! Imagine this: you've got this new diagnosis with a name you can barely pronounce. You go online (natch) and freak yourself out learning all about this disease. Then, somehow, you find your way to SAA. You get information. Real information, as in facts. This is priceless. You get connected. You find out you are not alone. You find a doctor through SAA. This is beyond priceless. You even get something else: hope. I've gotten support, resources, even a mentor through SAA. I can't say enough good things about it, so I'll just say this: thanks, SAA. Thank you so much!

The Great!

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

I have spondylitis.

Ways to make it better...

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

Give them lots and lots and lots of money so they could grow even more and support even more individuals and their families.

March 11, 2011

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March 11, 2011

I was diagnosed with AS at the age of 18, after countless incorrect diagnoses. Over the years, the SAA has been a great source of information, treatment options, resources and support. It's incredibly comforting to know that there's an organization devoted to spreading awareness of a disease that many misunderstand or overlook. The treatment options and resources they provide are invaluable, fund-raising opportunities are endless, and their work is tire-less. Thank you for making every AS patient feel less alone and for all your incredibly hard work!

The Great!

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

...research of treatment options and general disease knowledge.

Ways to make it better...

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

...be sure to spread it's awareness so that people are better educated about AS.

March 11, 2011

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March 11, 2011

This organization has been instrumental in bringing the information of a formerly misunderstood disease to health care providers and the general public. From the time I first found SAA on line to the present, I have witnessed an increased understanding and more knowledge of AS from all my health care providers.

The Great!

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

The comfort of having a place to go for information and of finding out that I'm not alone. For years I thought I was a lazy complainer but after my diagnosis I had a name for how I was feeling. The diagnosis wasn't enough though, SAA helped with specific information. Specific information helped me talk to my doctor, helped me manage better at home and helped me realize my limitations but also the encouragement to keep active.

Ways to make it better...

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

Put even more effort in reaching the general public. I'd like to see more on TV shows like the Dr. Oz show.

March 10, 2011

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March 10, 2011

The Spondylitis Association of America has helped me in more ways than can ever be expressed. SAA has brought me to a community of my peers. They helped to give me the courage to face AS head on. The information and resources they provide help to educate not only myself on the disease but so many others. They are a voice of comfort. The remarkable work they do for AS is never ending. Thank you SAA for all of the support you provide! You have truly helped me in my AS journey!

The Great!

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

every day life. Without SAA I would not be armed with the resources, support and courage to battle AS.

Ways to make it better...

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

try to get it more "air" time.

March 10, 2011

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March 10, 2011

The Spondylitis Association of America has been a true blessing in my life and the lives of those who love me. I was diagnosed at age 15, and they've been there from the start - offering tremendous personal support, spreading awareness, providing crucial information and new, fundraising, and working tirelessly toward a cure! Their staff is incredibly kind and generous; they've made me feel like part of the family. Thank you for everything that you do!

The Great!

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

My every day life. Every element of my life is better and less painful thanks to their efforts...

Ways to make it better...

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

Make sure it was more advertised and publicly recognized!

March 10, 2011

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March 10, 2011

My son was diagnosed with Spondyllitis when he was 11 years old after eight years of trying to figure out what was wrong with him. The information and support of this organization has been very helpful in helping my family understand this disease and help him discover ways to deal with this devastating chronic disease.

The Great!

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

the form of educating myself and my son on Spondylitis.

Ways to make it better...

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

hope they could increase national awareness of the prevalence of this disease and their organizations work to support people afflicted with spondylitis.

March 9, 2011

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March 9, 2011

I am recently diagnosed with AS, however, I've been in pain for over 10 years. Wanting to find more information on AS, I found Spondylitis Association of America and found lots of information on AS. It really helps knowing I am not alone fighting this disease.

The Great!

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

Finding more information on AS.

Ways to make it better...

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

Advertise more so more people will know this organization.

March 9, 2011

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March 9, 2011

I have gained so much knowledge about my condition from the Spondylitis Association of America. I appreciate all the information and the support available. Because the disease is fairly rare, there aren't a lot of library books or websites available. I am so thankful to be able to come to their website, ask questions and get answers right away.

The Great!

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

I am a more informed patient and I've found support from others with the same disease.

Ways to make it better...

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

get the word out more! I had never ever heard of spondylitis until I found out I had it.

March 9, 2011

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March 9, 2011

I'm a newly diagnosed AS patient, however I've been suffering for 20 years in what started out mild but quickly ramped up. (knowing what I've been through I would say I've got a pretty big pain threshold). I ended up with a spine that is fusing and my pelvis is already fused. I'm having a hard time accepting my diagnosis and have been putting off starting Enbrel due to side effect concerns.

This website is helping me make these key connections and provides me with information so I can make an educated choice on how to manage this disease.

The Great!

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

I'm connecting with others that share my disease

Ways to make it better...

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

I don't have any suggestions

March 9, 2011

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March 9, 2011

The Spondylitis Association of America is the premiere non-profit organization working to improve the quality of life of patients with Ankylosing Spondylitis and related diseases. They support disease specific research projects, work to educate medical professionals, and provide unequaled support to the patient population in the form of informative literature, patient education symposiums, and online tools.

As an AS patient, I have turned to the SAA time and time again for support and advice as I come to grips with my disease. As a research scientist, I appreciate and understand that this organization is the driving force behind several ongoing projects to identify better therapies and diagnositic tools.

The Great!

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

as a patient and a research scientist

Ways to make it better...

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

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