#asawareness

Hello,

I had mentioned in earlier posts, that I was following Spondylitis Association of America as part of a class assignment.  At the beginning of the semester, I made sure that I was following their Facebook page, which I already was since I have AS.  I also started to follow them on Twitter and Instagram as part of the Assignment.  When I went to their actual web page, www.spondylitisassociation.org, I even signed up for their email newsletter on April 19th.  On April 20th, I received my first installment of the newsletter, the eSun (Electronic Spondylitis Update Newsletter).  The eSun included updates about their projects to raise awareness, talk about upcoming seminars and mention the work that Dan Reynolds was doing with www.thisaslife.com

I don’t recall seeing the May edition yet, but I’m not sure if the newsletter is monthly or quarterly.  

However, I did receive mail from the Spondylitis Association of America.  Since the Spondylitis Association of America is a non profit, they have to get their funding from private donors, grants, etc.  So the mail that I received is a request for donations.  (See Pictures attached). 

Spondylitis Association of America has made a few Facebook posts in the recent week.  

On May 6, World AS Day, Spondylitis Association of America Posted a video on Facebook about Imagine Dragons lead singer, Dan Reynolds.  Dan is on a mission to let others know about AS.  In this video he chats with a rheumatologist, Hillary Norton, who also has AS.  Check out this ThisASlife.com to see this video and others and see what else Dan is working on.

May 7th on Twitter they retweeted a post by Health Central.

May 8th, they actually hosted a live Facebook web chat with doctors from Hospital for Special Surgery and they also offered a  free Spondyloarthritis Educational Symposium NYC on May 11th!  For more info, check out this website: http://www.spondylitis.org/Seminars-and-Webinars 

May 9th they posted a question on Facebook potentially to anyone who follows their page, which I assume is mainly people with AS or other forms of Spondylitis.  There were about 56 different answers.  Fatigue is a huge issue that people with auto immune diseases suffer with.  Regardless the amount of sleep we get, we are always tired.  

Their Instagram page hasn’t had any recent activity to post about.  www.stopAS.org is listed in one of the last pictures that they posted.

Spondylisits Association of America’s purpose to is to educate people about Spondylitis and the month of May is AS (Ankylosing Spondylitis) awareness month.