"To be a leader in the quest to cure ankylosing spondylitis and related diseases, and to empower those affected to live life to the fullest."
-mission statement
I can't say it enough. I'm so profoundly grateful for The Spondylitis Association of America (SAA), an organization that I wrote about in my May 7th post Spondylitis Awareness & How To Help. The organization is filled with caring people, working tirelessly to fund research, support Spondylitis sufferers like myself and the people who love them, and bring vital awareness to the public.
Far too many times, Spondylitis goes undiagnosed simply because it's not on the public radar. Those who haven't been handed the diagnosis by a skilled professional don't know what to look for don't know what the ramifications of the untreated disease can be. While there is not yet a cure, we are lucky enough to live in a time of fantastic modern medicine. If diagnosed early enough, Spondylitis sufferers can avoid dramatic and permanent damage to their joints like I've managed to do thus far. SAA recognizes this as a great opportunity.
Recently, SAA has begun a campaign aimed at spreading awareness and reaching thousands of undiagnosed sufferers (on 400+ Television stations and even here in the middle of Times Square!) Please Click here to read the press release and view the video about this awesome initiative. So have you had back pain for more than 3 months? A central element of this campaign is this newly released, comprehensive, and free questionnaire developed by physicians to help uncover undiagnosed cases of Spondylitis. It's simple and no personal information is required or collected.
Just a little plug here... please don't forget SAA relies heavily on funding to advance research and work towards a cure for Spondylitis and related auto-immune diseases. Consider donating here to SAA or check out their shop which sells anything from informative books to "Stand Tall" bracelets - inevitable conversation-starters and a great way to spread awareness!
Love, Maya
Posts
darren and i always wear our stand tall bracelets, i can't tell you how many of dozens of people we have informed and also how many people we have met with autoimmune diseases that they were not comfortable disclosing prior to our bracelet talk.
ReplyDeleteStand tall. I love it. I'm living with MS and working on standing tall. OH MY GOSH--there is an award for you on my blog Thursday. Not a good color match, but...only if you want it.
ReplyDeleteBetsy, that's so cool. I have a feeling it wasn't just the bracelet- you have a way about you that makes it easy to open up. Wear it when we meet?
ReplyDeleteDiane, I'm so happy to have you as a follower of my blog, you seem like an extraordinary person. I'm sorry to hear about your battle with MS, but I'm glad we've connected on our journeys. Also, thank you so very much for the versatile blogger award :) It really means a lot.
Maya, thank you so very much for your support, your kind words, and also for the work you are doing!! We love your blog!
ReplyDeleteKeep up the great work!
Elin
SAA
Dear Maya,
ReplyDeleteThank you so much for your lovely words in support of our efforts and for this blog. We cherish your support.
Please accept my warmest regards to you and to yours--also, please say "hi" to your mom and dad, on my behalf.
-- Laurie S.
SAA Executive Director
Maya,
ReplyDeleteGreat blog! Thank you so much for all you do! I just send a link to your blog to a member who has two daughters (ages 20 & 22) who have recently been diagnosed with spondylitis. Thought it might be helpful for them to connect with another young person who is living with a chronic disease. It helps to know you're not alone.
Susan Jones
SAA Director of Development
Elin, thank YOU very much for your support and for all the work you do every day. You don't know what it means to everyone suffering from this disease...I'm so glad you like my blog
ReplyDeleteLaurie, Thank you for saying hi! It's great to hear from you. My parents asked me to pass on a "big hello" for them. As always, thank you from the bottom of my heart for all your work
Susan, Thank you for checking out Loving with Chronic Illness! I'm so glad you thought to connect me with these girls. Through my blog, I've developed friendships that can't easily be described. I've never had a support network that truly "gets it" firsthand and it gives me tremendous strength to know I'm never alone. I'd be so happy to connect with them and anyone else you feel might benefit.
I have a little something for you at my blog.
ReplyDeletehttp://ohboy-boys.blogspot.com/2010/07/winning-award-sharing-it-with-15-others.html