I cannot express the welcome I felt when working with the people at Spondylitis org. I came to help to give back to the community , but what I got was much more than that. I received a extended family and a lot of friends. My experience I will never forget
SAA is truly a great nonprofit and it has dedicated individuals who genuinely care about the organization's purpose. SAA undoubtedly cares about its cause more than anything and it definitely shows through all the hard work,effort, and careful planning. I really enjoyed my time volunteering and I'm grateful that I had such a fulfilling opportunity since I was able to help this wonderful organization so they could keep helping others.
I am so grateful to SAA - for their support groups, for the research they sponsor, for the sense of community they foster, for the awareness they raise about spondyloarthropothies, and for the education they provide people living with these conditions to empower them to participate in their own health decisions. Thank you!
An amazing organization with a great team behind them!
I'm so glad I chose to volunteer my time with the Spondylitis Association of America while completing my post-baccalaureate program at UCLA. They were very friendly and welcoming to me, which showed how grateful they are to their volunteers. Would highly recommend to my fellow pre-health/ pre-med students interested in the non-profit sector. I'm so thankful for the opportunity and experience I gained that I hope to implement in my future career as a clinician.
Wishing SAA and the members a successful and bright future!
SAA has been a most valuable resource. Most of the treatments and therapies that have helped me were found through the SAA. For Spondylitis patients The SAA is the only place where we can garner knowledge and become literate enough to be proactive with our disease treatment. As well as find a physician and support group all in one place.
I was diagnosed with AS in 2015. I have a fabulous MD who, after I reacted to Sulfasalazine recommended Remicade. I have been on Remicade for four years. It has definitely helped the AS disease progression. I am so thankful and appreciate his attention to my details. I also take chair yoga twice a week. Fantastic for anyone who wants more flexibility. The ASS
Has been helpful with direction on how to hep yourself.
Rarely have I come across a more personal, committed staff at a nonprofit. In the past few years SAA has doubled, yet remains small and close-knit. Spondyloarthritis is not rare, but it's treated like it, and the only national nonprofit committed to funding research, raising awareness, and supporting patients is the SAA. They have a heavy lift and are doing a great job. If anything needs changing, it's that more materials need to be translated to reach more people.
When I was diagnosed with Ankylosing Spondylitis in 2013 I faced a dearth of information I felt I could trust. I was skeptical of my doctors as well as what I could find online from resources that were supposed to be accurate but weren't. Then I found the Spondylitis Association of America. The staff and the website were and are easy to trust and navigate, and I know that the resources and information were and are reputable and up-to-date. I have even become friends with some of the staff through the years. I refer people to the SAA website all the time through my blog (www.beingcharis.com) and individually. I am also a volunteer support group leader (one of many SpA support groups sponsored by SAA across the USA) for people with spondyloarthritis and am proud to represent the organization in that small way. The SAA seems to balance a tricky mixture of good relationships with patients, researchers, pharmaceutical companies, and more with grace. I can't imagine living with Ankylosing Spondylitis and not having the SAA to turn to for advice, research reports, seminars, opportunities to engage, support for patients like me, and trusted current news and information.
I recently had an opportunity to volunteer at the Spondylitis Association of America. It was a great opportunity to work with sincere and hard-working team. They were always ready to help me even if someone had to step out of a meeting so that I could continue to work on my given responsibilities. Everyone at SAA were great team players, knowledgeable and always ready to assist when asked. It was a pleasure to volunteer at SAA.
I love this non-profit!
I began volunteering here in February 2019 and have been blown away by the dedication and professionalism of the staff.
Creative, energetic, caring, giving people who love what they do and it shows!
I hope to be associated with SAA for a very long time.
Awesome non profit organization! My brother, Michael, had A.S. and was very involved with this organization for years. His advocacy work for the Spondylitis community and the Spondylitis Association of America while struggling with this chronic disease was his life work. The people and the non profit organization are absolutely wonderful to work with regarding all aspects of living with Spondylitis. I am now volunteering my time to support this wonderful non profit organization, Spondylitis Association of America.
I recently volunteered and have to say it was one of the best experiences I've had. The office staff were so friendly and helpful. They went out of their way to make me feel comfortable. If I requested help with the project I was working on, someone was always there. The Spondylitis foundation is a wonderful place and a fantastic office to for volunteering.
I recently volunteered for the Spondylitis Association of America and I found the experience to be very rewarding. I enjoyed participating in the association's efforts to spread AS awareness. The staff was attentive and welcoming from the start and they provided me with all the help I needed. I will not hesitate to volunteer for such a great organization in the future!
The SAA has been open to ideas on how to reach out to children who are diagnosed with Spondylitis or a related disease. They created a website, offer parent mentors, share children's stories and so much more. The team is always willing to help and answer any questions we have as parents of a child with Spondylitis. The research they help fund is what provides hope to many suffering from this disease. Thank you SAA for all you do!!!
The resources available are great! From the exercise videos, to the website for teens with spondylitis, to the support group contacts - everything is valuable!
When I was diagnosed with Ankylosing Spondylitis, my rheumatologist referred me to the SAA. They not only provided me with knowledge and tools, they gave me a sense of community and let me know I was not alone.
Earlier this year, I had the honor of performing volunteer work for the Spondylitis Association of America. From the moment contact was initiated, I felt very appreciated for any effort I was able to contribute. It is easy to see that the backbone of this organization comprises genuinely warm and caring people. As an added bonus, my contribution was possible to do virtually in the comfort of my own home! What I also appreciated was the open communication with SAA personnel in a "no pressure" environment. Highly recommended if you are looking for a volunteering opportunity! :)
I volunteered with SAA since February 2019 to June 2019. All I can say is this nonprofit is amazing. The staff working here are one of the most friendliest and hardworking people you will ever meet. They make you feel very welcomed! I would volunteer with them in a heartbeat!
I had a wonderful experience volunteering at SAA for 4 weeks in the spring of 2019! Everyday I witnessed how their dedicated, compassionate efforts helped change the lives of those who are suffering. Their kind and supportive staff made me feel right at home. I highly recommend SAA, and would volunteer there again in a heartbeat!!!
Thank goodness for SAA! After my diagnosis I discovered their website. They do an excellent job of staying up to date on the latest research, treatments, and resources. I was able to talk directly with staff to obtain referrals and other support. Their videos and magazine are professional and and added benefit. Thank you SAA! Liz
SAA has been such a great resource for me. I only wish I would have found them when I began my journey with AS 15 years ago.
Having a child with Spondylitis is scary and causes our family to feel alone or lost quite often. SAA has been instrumental in helping us find information, resources, help, a sense of belonging and HOPE. We are grateful to all of the employees at SAA that make us feel heard and that we are not alone in this fight against Spondylitis!
SAA is an amazing non-profit doing important work. I volunteered at SAA for 5 weeks over the summer and every day I came into the office, I saw people working extremely hard to help people with Spondylitis and create awareness about this relatively unknown condition. Not only does SAA donate large sums to research to help cure the disease, but it also provides support groups for those affected by Spondylitis. Great organization.
When I was diagnosed, SAA was right there to provide information and support. I immediately joined a support group, and between the leaders and the members, I was given hope and direction as to how to live well. When I moved, I became a leader for SAA myself to help others.
The SAA has shown themselves to me and my family to be honest, kind, genuine and concerned with my wife and her battle. We have been honored to partner with the SAA to raise money and awareness over the last two years and plan to do so for years to come. Highest recommendation!
SAA is a wonderful non-profit organization. Being an AS warrior, I am so thankful to have an organization like SAA.
The Spindylitis Association of Americahas been a great source of information and inspiration for me personally.
The website and periodicals have let me keep up to date with developments in research. Both allow me to be actively involved in my treatment and development on the horizon.
Being able to acquire pamphlets and brochures enables me to spread awareness about spondylitis and related diseases.
Being able to give out pamphlets to the general public starts a conversation with people who have never heard of spondylitis and talk about how it affects me.
Spondylitis.org can count on my support as a lifelong member! SAA has been a huge part of my healing journey. The staff at the LA office is awesome! Thank you for making a difference in so many lives. I am so honored to be a part of this amazing organization that is absolutely dedicated to helping others. Thank you, Susan Lorenzana
I had undiagnosed AS for decades. My pain was intense, but seemed to attack at random times and in random locations. I had back pain only occasionally. To be honest, although I knew the pain was real, I felt guilty about it and wondered if I was a hypochondriac. Thinking of AS as a back issue, I was skeptical of the diagnosis at first. The information on the SAA Web site was life-changing. My symptoms were atypical, but perfectly normal! Essentially all the resources I have to deal with my disease have come from SAA. Spondylitis Association of America is a lifeline. My rheumatologist provides prescriptions, but SAA provides information, community, and hope.
SAA has been a wonderful resource, offering support and materials I couldn't find anywhere else. AS is an overwhelming diagnosis. SAA helped me put my situation in perspective and take positive steps to improve it. I joined to receive the magazine and love it. I don't know how they accomplish so much with such a small staff.
I discovered the Spondylitis Association of America pretty quick after I was diagnosed with Ankylosing Spondylitis. I was so lost, having never heard of this or know anyone else that had. I discovered they did not have a Support Group in my State, so I jumped right in to get things rolling to start one.
Since that moment I have had so much support from this organization. Phone calls, emails, meetings, and plenty of resources. The SAA really values their members.
From just little notes of gratitude to helping find whatever they need in support. They truly stand behind their members 100%.
The Spondylitis Association of America is doing a great job of helping people with AS get diagnosed, find care, understand treatment and exercise safely. AS can be especially devastating when you don’t know what’s happening to you and SS of A is constantly trying to educate health care workers and the public as well in order for diagnosis to take place in a timely manner. Five stars all around!
Great for people with the disease , great information , great support
SAA has been extremely valuable for me. A fantastic resource for anyone effected by spondyloarthritis and related conditions. I've been a member for several years and particularly enjoy the support group/educational meetings they host. Very grateful for SAA!
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 kept me informed with their information on studies and up to date info. The treatment plan that I saw helped me and my doctor. I recently switched some medication due to this info. There is support from SAA and all the members.
They are great!
They have worked closely with me to start my state's first support group. I have absolutely loved every aspect of working with this organization. They have by far the most accurate knowledge of any other source and they have a strong dedication to raising awareness.
I have received pamphlets explaining my condition from SAof A after seeing their info to request more. I get more info by seeing what they post online/ their Facebook posts. It is often good info to share with others to help them understand my condition and what I have gone thru. It's great to have validation about what to many is an " invisible disability" that is very real and debilitating!
The SAA is the best, most ethical non profit group I have ever attended. They really help you cope with a horrible disease that most people cannot even spell or have even heard of. I learned the most by attending meetings and meeting other members. The SAA embraced me like family and is run like a family as well. I would highly recommend this nonprofit.
After my diagnosis 17 years ago SAA was the first great website I found. It was full of information and reassurance about a disease most people had never heard of! They have stayed on the forefront of new developments and continually expand their information and support for all of us.
Since I was diagnosed with Spondyloarthritis, the Spondylitis Association of America has been a huge source of support for me. Their support group has been a lifesaver! It helps me to meet others with similar experiences, feel that I'm not alone, and get useful information on doctors, treatments, and lifestyle changes. I also appreciate SAA's Facebook posts, and the magazine Spondylitis Plus, which have both provided me with crucial information. The existence of SAA makes life much more manageable for people like me with spondylitis!
The staff and volunteers of SAA are very knowledgeable about AS and are passionate about providing as much detailed educational information as possible. Their web site is an amazing resource as are their great volunteer support group leaders. I'm continually impressed by the compassion and caring of this organization. SAA is clearly very dedicated in it's quest to help find a cure for AS.
The SAA is a World Class organization, run by a remarkable, dedicated, and brilliant leadership team. I will forever be indebted to this amazing organization and the phenomenal individuals who work so hard everyday to advocate and improve the lives of spondyloarthritis patients.
In 2009 I had my first case of Uveitis and tested positive for HLA-B27. Since 1999 I had been riddled with chronic joint pain, "phantom" illnesses which included gut problems, not being able to walk some days, swollen fingers and crippling fatigue. Finding the Spondylitis Association of America was like Manna. I finally had access to all the medical information I needed and an amazing support group of professionals and peers who were also experiencing so much of the frustration of having an undiagnosed condition. I was quickly fully diagnosed through Doctors recommended through the network, was able to manage my physical condition through exercise and treatment recommended through the SAA. I often wonder what my life and health would look like if the SAA didn't exist. This is a beautiful and truly altruistic organization.
SAA is passionate about spondylitis research, advocacy, and education - and they're the only non-profit out there dedicated specifically to spondylitis. Ive been a member for many years; my father and uncle both had Ankylosing Spondylitis, and now I do, too. I am so thankful this non-profit exists!
SAA is spearheading critical research in ankylosong Spondylitis and the related auto immune diseases. SAA also helps support the individual support groups around the country.
I've had AS for 35 years and only discovered the group a few years ago. Since them they have helped so much plus now I know there are others out there, it's not just me. Now,with there help I distribute information when asked. A lot of people would be completely alone without SAA.
Spondylitis of America is an exemplary non-profit striving to find a cure for persons suffering from ankylosingspondilitis and other related diseases. I proudly serve on the board of directors for Spondylitis of Ameica and strongly support our mission.
I have had AS for 48 years and when the Spondylitis Association of America began we who have this disease started seeing progress toward better management of the disease and its many ramifications. The research has been fruitful and continues to give us more than just hope; it gives us tangible paths to a better, more productive life.
Below is a pasted email I sent to The SAA Philadelphia Support group...a few years ago.
(I am the SAA group leader)
I have the disease for 47 years...
I was formally diagnosed 24 years ago...I then joined SAA.
SAA is the #2 contributor to my success with my disease...
(I am #1...my attitude and determination)
To let the disease control you.
you control your disease.
(that’s the easy part)
(I am sharing this with the whole group)
I have been thinking about your email, your childhood, your disease.
I hope feedback from the group has been helpful.
A question occurred to me......Does a traumatic childhood contribute to an early onset/trigger of the disease?
...and something that we carry though adulthood?
I am asking the group to look at themselves, their offspring or other family members.
Is there a potential truth to this thought?
In the past, I have asked the group to look at themselves and note if there was an event in their life that preceded their onset of the disease.
I would say ~half of the group remembers a trauma (e.g.: fall/injury) or a bacteria type event (usually gastro-intestinal) prior to the initial onset of the disease.
I looked at myself, looked at the words that described your childhood.
We both experienced onset of symptoms in our younger years.
(I assume you know that psoriasis is a symptom)
My childhood (like yours)...not normal....
Two orphanages, five grade schools...the streets of Chicago.
I remember sleeping in $1/night flop houses...in the back seat of a car.
(I taught myself to read...from reading comic books)
My childhood was memorable...(contributed to who I am now...)
I consider myself very fortunate....I know people who have survived worse....
Stress is one the triggers for symptoms.
Could an unconventional childhood, abnormal stress contribute to the early onset of the disease????
Playing the cards you are dealt.
It’s not about the quality of the cards you are dealt..
it’s about how good of a card player you are....
If you are a member of the SAA Philly support group....
I feel comfortable in saying you have been dealt a below average hand.
(in terms of health)
SAA and this group is an opportunity for you to discover if you have the ability to become an above average card player.
Some of you know this of me....
I have been fighting my disease 47+ years.
I consider myself successful.
I consider myself fortunate.
I consider myself an above average card player.
My symptoms (over 47 years);
-Sacroiliitis – Gone (the pain part)
-Crohn’s – Gone
-Heart valve – Gone (I am still trying to figure out how I reversed that one :-)
-Tendinitis – Gone (thank you Mary for turning me towards emulsified Vitamin D...Nicole isn't Vitamin D grand? )
-Uveitis - Gone (I know my trigger...and avoid it)
-Fusion, spine – work in progress .... My sacroiliac joint – fused. Middle/upper back/neck...will not allow it to fuse.
-Fusion – rib cage....work in progress, will not allow it to fuse.
-Diabetes – work in progress (I am normal based on behavior changes diet/exercise.... I have learned having Spondylitis increases probability of acquiring this disease)(from SAA)
-Asthma – Gone....I have learned having Spondylitis increases probability of acquiring this symptom.
(Diabetes and asthma symptoms acquired early fifties)
-Joints - symptom free (pain/symptoms gone or minimized...do not know if it’s exercise, supplements or diet changes...or all the above)
I am med free.
I have an attitude.
One can enjoy an interesting and productive life and still have spondylitis.
(for me it’s a lifetime pursuit)
Spondylitis Association is a go to site for anyone needing up to date information on Spondylitis! I am the Spondylitis support Group Leader in our area and find this site extremely helpful as well as the entire association!
I often send people to this site if they have symptoms of spondylitis but aren't even sure about their condition.
I have been a member of the Spondylitis Association of America for 20 years. The SAA is the most accurate source of current information regarding the diagnosis and treatment of A.S. and other types of spondyloarthritis. There website has a wonderful catalogue of past issues of the quarterly news magazine "Spondylitis Plus". The SAA also provides support groups in many areas of the country. Finally there is a wide selection of literature available on line along with many webinars.
SAA has been a life saver for me after my diagnosis with AS three years ago. I came into my first meeting a shell of a human being after having suffered months of constant soul crushing pain before doctors finally figured out what was going on in my body. I found a community of people that were willing to listen, share their own experiences and offer support. Like so many things in life, there is strength in knowing you are not alone. Since then, I have learned that SAA is the foremost expert on a disease that is still widely misunderstood, even within the medical community. The disease can present itself very differently from one person to another and it is great to have a group to go to with questions about how it's affecting you. Odds are that someone has experienced a similar symptom or found success with a certain treatment. If you have a question that is harder to answer, SAA is willing to do the work to look for answers.
Through a lot of rehabilitation and recovery, I am now feeling great and in the best shape of my life, but still enjoy going to meetings to see the friends I have made and be there for others who need support.
I have been diagnosed AS here in Italy but wasn't given many information, especially as far as the entheropatic form is concerned.
The SAA website was a happy discovery and I decided to become a member, not only to support it but also to keep updated with the latest discoveries. I love the webinars.
I am so grateful to this organization. My journey with psoriatic arthritis/spondyloarthritis started 4 years ago. The Spondylitis Association website has been and still is my go-to source for information beginning with my diagnosis and continuing through various treatments. It publishes the most informative educational blogs and articles, works with the best doctors, specialists and researchers, and offers webinars with doctors updating members on the latest information available. I wish I could support this organization with more than my small donations, because they have helped me so much.
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!
I am 57 years old, I've had AS for more than 20 years. Please help this cause. Many suffering people go undiagnosed for years just like I did. I still suffer with disabling pain but someday they will find a cure. Now, I have HOPE !!!
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.
When my son was diagnosed with AS I wanted to get all the information I could. The web site is a great source of useful information; and it has links to support groups, doctors, written material, and seminars. As a parent, and advocate I'm grateful for all the knowledge I've gained. And I know any donations made go where they can do the most good.
This is a website I go to frequently as we navigate my son's treatment.
I absolutely love the SAA. They have been such an amazing resource and source of support for my family and I during this very challenging adjustment to life with Ankylosing Spondylitis.
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.
SAA is at the forefront of research and information for Spondyloarthritis and its' family of diseases. With as little as 2 million dollars a year, they are succeeding in their quests. This, however is a very little known autoimmune disease and needs a bigger spotlight so more funding can be donated by the general public. This disease effects more people than Lou Gehrig's disease, MS, and Cystic Fibrosis combined, but is very unknown it seems. SAA calls every single person that makes a donation to the association. Not just a typed form letter, but a phone call from a real person that truly cares about what he/she is doing. I am a proud supporter of SAA and a patient with Ankylosing Spondylitis.
When I was diagnosed with ankylosing spondylitis I knew nothing about what I was facing. The sources that I found on th Internet was more scary than helpful, some with bad information. SAA filled the information gap left by my doctor for me with scientifically grounded info, videos, and newsletters. My favorite part was their collection of stories. Whenever I feel alone in this fight, I go back to the stories and know that I have a team behind me.