President and Founder
My name is Tara and I've struggled with chronic illness my entire life from migraines due to my rare syndrome of Syringomyelia. Even though I knew I was rare I had no idea of the "Rare realm" I would encounter. In 2011 my mom was in a severe car accident which lead to SMAS. It took 18 months for her to be diagnosed and at diagnosis we were lead to believe that one in three die. Advocating and raising awareness has become my passion.
Hello, I'm Sue, I am on the board of directors for the SMAS non-profit. I make cards for the LiLi Luxe Card campaign. I sew my own tubie pads, accessories, and enjoy quilting. My sewing allows me the opportunity to donate to the SMAS Patient Assistance.
I was diagnosed with SMAS in 2015. I had gone from 135 pounds down to 81, had at least 6 abdominal surgeries, 3 PICC Lines for TPN and hydration. I also suffer from gastroparesis, have a J tube for feeds and medications, and a separate G tube in my stomach to vent and drain. I love what I do because it helps the non-profit and all the warriors.