The last week, I have thought so much about Laura. I’ve spoken to several of her friends and to her fiance’s mother as well. They are working hard to raise awareness and keep her fighting spirit alive. It all just makes me think more of how I can continue to do that as well.
One thing Laura really wanted to work on was to collect pictures of the infamous Still’s rash to have as a reference for parents and patients looking for an answer and to know that they are not alone. We had talked about getting rash pictures about a year ago now, so I have so many of my own.
Laura did so much to inspire, support, and help us all through hard times. Now that she is gone we too must pick up where she left off and continue to help each other and the patients yet to come.
I need your help.
I want to collect rash pictures and feature them on a new page on this site in Laura’s memory. I need pictures other than mine to make this happen – your pictures, the pictures from your sick brother or baby girl. Spread the word to others you know facing Still’s so that we can try to create a database of the different ways this rash can look and how it can manifest.
You can email pictures or video (or whatever!) to Kirsten@notstandingstillsdisease.com.