From my family’s journey to countless patient stories. The message is clear.  Patients need answers now.

For those of you who know me even just a bit, you know my connection to our patients and my demand for progress begins in my own family. My daughter, Grace, age 28, has lived with chronic, painful, life-altering illness for over twelve years. Age 16, her life disappeared as we once knew it. 

Just last week, my daughter Molly got engaged. It was beautiful—true love, a hopeful future, and a joyful celebration surrounded by family. It genuinely filled my heart for her and everyone who loves her. 

And thankfully, Grace, her sister, and our family’s complex disorder patient, was there too. It was a lucky day.

As I learned quickly with Grace, complex disorder patients were lacking a well-organized research network of experts and a true research model to move the space forward faster—one built to handle different patient symptoms with no true explanation, speed up understanding of the interconnectedness of different systems, and deliver real impact. That’s exactly what CODA does.

CODA came into being because a very strong, determined patient leader - Fidji Simo - knew something more had to be done. Much more.