I believe in the power of storytelling as means to advocate for rare diseases, chronic illness and disability. The moments I have dared to be vulnerable with others about my rare disease journey are the times I’ve made the most impact, and I strive to use my story to connect universally with other chronic illness warriors. I’ve also helped others write and share their story through my ongoing “Rare Stories” series, and use my blog as a platform of advocacy. This year I began advocating locally with the Rare Action Network, and have personally testified at government hearings regarding the creation of a Rare Disease Advisory Council at the State Government level in Minnesota.
Best in Show: Blog Nominee
I’m a Patient Leader