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78 Reviews
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September 3, 2013

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September 3, 2013

When my doctor told me that I probably has AS, I was mystified as to what that meant. All the information that I initially found told me that I would eventually turn into a bent over, stiff-spined, disabled victim. I am so grateful to SAA for all the current, thorough information that they offer. From their educational articles I learned that this didn't have to be my fate, and from their discussion forums, I got my questions answered by others with the same experiences that I had. The support and valuable conversations I have had there have changed my life, and now, 10 years later I am able to offer words of support to others. SAA is the best!

Ways to make it better...

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

Increase the educational marketing, to reach even more people and make others aware of this disease.

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

When was your last experience with this nonprofit?

2013

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

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 15, 2011

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June 15, 2011

SAA has webinars giving me the latest information on research into spondylitis.

The Great!

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

SAA sponsored my daughter who is going into spondylitis research for the 2006 Unmet Needs NIH conference.

Ways to make it better...

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

Wish I could think of one.

June 15, 2011

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June 15, 2011

The SAA represents the voice of individuals with A.S. in the United States. Their website provides the most accurate source of medical information on the internet. Webinars and Seminars allow the membership to both learn more about their disease and ask pertinent questions related to their personal needs. Support groups have been established in many areas of our country. They provide much needed interaction between individuals and families dealing with spondyloarthritis issues.

The Great!

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

The organization helps me keep informed regarding management of my disease.

Ways to make it better...

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

Broaden the educational arm of the organization.

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.

March 9, 2011

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March 9, 2011

My name is Jennifer Visscher and I have a disease called Ankylosing Spondylitis. The Spondylitis Association of America was the first place I turned when I received my diagnosis many years ago. The SAA is a resource for information, community forums, and research for a cure. The people at the SAA are dedicated and passionate about spreading awareness, hope, and the message that we can all "stand tall" in finding a way through our difficult chronic illness.
I was so moved to help the SAA with the work that they do that I started volunteering my time speaking up and speaking out about Ankylosing Spondylitis and they have embraced me and my efforts. For that I am extremely grateful. This is an organization to be proud to be associated with doing great work for their constituents every day.
Sincerely,
Jennifer Visscher
My Blog - http://thefeedingedge.com

The Great!

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

outreach, support for my awareness project, a feeling of community and mutual respect

Ways to make it better...

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

Make sure they get more funding so they can continue to educate, outreach, and research for a cure.

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

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

updated and easier to use website for information

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