SPONDYLITIS ASSOCIATION OF AMERICA
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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
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
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
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
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
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...
Expand!
My Role: Volunteer & I started a year long awareness campaign where I create an Art Apple for AS everyday. We share personal stories and "guest apple" art as well. The SAA has supported my efforts - embraced my project and the icon of the apple as a way to bring us all togeth.
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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
March 9, 2011
This organization has saved my life. They are the experts in the field of Ankylosing Spondylitis, and they are warriors in the fight against this horrible disease. The SAA is on a mission, to educate, to support, to raise awareness and to find a cure for AS!
The Great!
I've personally experienced the results of this organization in...
their forum board, watching their podcasts, and in looking for information.
Ways to make it better...
If I had to make changes to this organization, I would...
Give them more money!!! The only thing that would make this org better would be to give them more money in the fight against AS!
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