When I was pregnant with my daughter I though that it would be my job to prepare her for the world...instead I find myself needing to help create the world to better support children like my daughter. This is my work. It exists in the space somewhere between being a mom, an advocate, a PhD in communication and rhetoric, a citizen scientist, and a writer.
WHAT I DO
In Esmé's first years of life I had to learn how to advocate for my daughter in all kinds of ways. Eventually I started to want to formalize this work--in 2012 I started blogging regularly about what life is like with a child who has a disability. In 2013 I founded the Cute Syndrome Foundation to fund medical research for PCDH19 and SCN8A Epilepsy.
WHO I AM
I love my daughter. I love my advocacy work. I love telling stories. I love writing what I wish I could say. I also like mixing pretty cocktails, punching heavy bags at the boxing gym, and swearing.
If you are interested in articles, speaking engagements, workshops, or have questions about my advocacy work, please contact me via email or using the form below.