Had a wonderful experience at their recent event. Very well organized and a great resource for families dealing with AS. Richard is a real gem - they are lucky to have him at the helm!
SAA has been a great resource for me since finding out about their organization in early 2007.
I suffer from AS and up until I found them, most people didn't know or care about AS, including many people in the health profession. For years I was misdiagnosed until I finally went and saw a rheumatologist in 1995 and got confirmation from the Mayo clinic that I had AS. Back then, the treatments were not nearly as advanced until several of these new biologic injections became available. I started on Enbrel in early 2007 and the relief was immediate but the cost was very high even with my health insurance and deductible. It was SAA that unlocked the opportunity to be able to purchase on a copay program, which drastically reduced my out of pocket cost. Since that time, I had to change medications and I've been on Humira now for 8 years. These drugs were life changing for me and I only have mild AS, unlike many others who have a chronic case of it. The SAA newsletters and emails have helped to provide me much information on AS that offer me support in my continual battle with the disease. I encourage anyone dealing with AS or many of the other inflammatory disorders that are in the same family to utilize SAA as their resource in dealing with these diseases. Thank you SAA!
My mother has AS, and SAA has been a fantastic resource for us these past few years. There's so little out there for patients and caregivers, but this resource is great quality and I would recommend it to anyone affected by AS. Thank you SAA!
I have RA and SpA , this organization has helped so much.When I was first diagnosed, I knew so little about the diseases, thanks to SAA, I am better informed and therefore better able to cope.
SAA is a bunch of whiners who listen to the medical profession's prescriptive bs, while ignoring the causes of AS, and the only natural solution... elimination of starch in the diet.
I have received a lot of helpful information and updates at the disease. I was on two online support groups until it became too difficult listening to people argue, watching members die, and hearing that members committed suicide. This is a way for me to receive updates without all of that.
I love receiving information that will benefit me in my area. I enjoy finding others in my area that are like me and places my family can join me for support and learn more about my condition. I also love finding information about new medicines that I can review with my rhumeytologist.
W H Y !... charities must stop funding the historical failure of animal research (youtube.com/ms4mulla1). B I L L I O N S of dollars every year prove the failure of animal research. a l s o, the TRUTH about polio by albert sabin, m.d., no LIE can live forever!... animal research has never been validated.
Both my daughter and I have Ankylosing Spondylitis. They have been a fund of accurate information and support. I do not hesitate to recommend them and my wife and I support their ongoing work
I have been able to participate in research on SA. My daughter was able to participate in a research project, she was able to receive aggressive treatment and when she moved out of state was able to locate a specialist because of SAA.
SAA has been wonderful in all aspects of my having AS. The organization mailed me a FREE ice-chest with ice packs inside for travel purposes, a FREE container to dispose of my injection (Enbrel) syringes, many FREE pamphlets and brochures. SAA also assisted me in obtaining financial relief for the cost of Enbrel. I have supported SAA with financial contributions, albeit small donations at times as my finances are tight. The toll-free phone assistance is PRICELESS as there is ALWAYS someone there to answer questions and have a person there to help me through emotionally rough times. SAA is a God-send!!!!
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.
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.
SAA gave me so much support and resources when none could. Not just for me but for my loved ones too. They give me a lot to look forward to and connected me with other like me, they also had a hand in providing me with great care with the top doctors in the field. They were there when I needed them most and they continue to be there for all that are suffering with this disease.
I didn't know much about this disease when I was first diagnosed and it scared the heck out of me, and like most with an illness I sought answers. I eventually became unable to work, therefor loosing the only resources I knew of at the time making it that much more difficult in dealing with this disease. But just when I was starting to give up I found SAA or I should say it found me, and they gave me hope, then they gave me support, then they gave me the resources to cope.
I can honestly say they are the best nonprofit around, their dedication never ceases to amaze me, and their compassion is unbeatable, they truly care and will take care.
When I was diagnosed with Spondylitis I had never heard of it and had know idea where to find reliable information.
That is why I was glad that my search led me to SSA. Their website has so much information in one place, so I don't have to spend pressure hours searching it down. They also keep me apprised weekly of new information on the disease, as well as send updates on new studies that have been started or old studies that have made progress.
They are very deserving of all the support of America, because you never know when you or someone you love will be diagnosed.
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!
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!
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.
So much information, such great people to help.
Even my Dr. recommends SAA!
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!