MY WORK
I write about parenting a child who is medical fragile and report on topics like the impact of healthcare laws and the ethics of prenatal testing. I offer consulting services to organizations, companies, and institutions trying to better serve rare disease populations. I can be heard telling stories about my experiences with my daughter Esmé on the popular 2017 Story Collider podcast titled "Outliers" and the 2017 Hole in the Wall Gang Camp Gala. I am also the Founder of the Cute Syndrome Foundation.
MY SERVICES
I am available for the following services:
- Writing, including guest blog posts, reported features, and personal essays
- Speaking engagements
- Strategy for patient and rare disease community outreach and engagement
- Coaching for institutional interactions with parent, caregiver, and patient populations
WHO I AM
Since Esmé's birth I have done my best to keep up with the plan in my daughter’s genes, embarking on seemingly unending journey into the place where science, medicine, and love collide. I also like mixing pretty cocktails, punching heavy bags at the boxing gym, and helping daughter communicate with her Muppet friends Ernie, Walter, Abby Cadabby, and Rosita (and begging her to finally stop blowing off Elmo).