​​Rare Disease Week in D.C. was nothing short than incredible and even that is an understatement. Skye and I ventured off from TN and made our way to D.C. where we jammed out to music, had Starbucks every single day...actually a few times a day.. and became closer as business partners. Skye and I were already best friends and we had already worked together with FD WARRIORS INC. ( the non-profit organization that she started) but we hadn't seen each other's full potential until this trip. We found each other's weaknesses and each other's strengths. As the week went on people started calling us the power team and honestly that's how it felt. I remember so many times just standing there in shock that we were actually standing there representing Fibrous Dysplasia and McCune-Albright Syndrome. Since creating the FD/MAS Awareness Ribbon back in September of 2012, I had dreamed about being able to stand there on Capitol Hill one day and we did it. We were probably the most exhausted we've ever been as we were trying to take in all of the information to speak to Congress about what was important to us, our organization, our warriors. In my opinion we made our mark on D.C. and luckily we get to go back in November together to represent once again and let our voices be heard.

​Rare Disease Week in Washington D.C. 2017