Do you want to work? Do you have to work? How do you caregive and work?

At the age of 12 months Daniel’s first child Lucas was diagnosed with the rare disease Menkes Syndrome. After adjusting his expectations of what raising a child might look like Daniel began to tell Lucas’ story with a short documentary. That film led to Daniel co-founding DISORDER: The Rare Disease Film Festival and later The Disorder Channel, both dedicated to spreading awareness for patient families facing any of the more than 7,000 rare diseases. One of Daniel’s stories about Lucas won the 2015 Rare Patient Story Award from Global Genes. His award-winning 12 minute documentary on Menkes Syndrome is narrated by Oscar nominee Mary McDonnell. In 2008 he founded the Ballston Spa Film Festival. He was a pioneer of original content online (now called web series) and co-wrote and co-produced the internet’s first animated series. He has created videos and marketing materials for American Cinematographer, PBS, RightRice, bio-techs, hospitals, most major movie studios, TNT’s “The Closer” and HBO’s “Curb Your Enthusiasm” among others. He has written for Geek Magazine, VideoMaker, Boing Boing and The Mighty. He has been a blogger in residence for Courageous Parents Network. He currently works as Global Genes’ Director of Community Engagement.

Naomi D. Williams is a Life Doula, supporting parents and family caregivers as they navigate the complex systems that come with a life altering medical diagnosis. She is also the author of And God Remembered Noah: A mother's heart-opening journey through 22 weeks in the NICU. As the mother of a micro-preemie given a poor prognosis who now lives with medical complexities, Naomi models what a good quality of life can be like. She enjoys getting lost in nature and taking long deep breaths on her yoga mat.

Emily is a mom of four kids, two doodles, and wife to a railroad conductor. Residing in Richmond, Virginia, she spent the last 10 years as a teacher, until the care for her daughter Chloe became a full-time job. Chloe was officially diagnosed with a PIK3CA activating mutation and experiences chronic pain.