To this fresh year and the best of people
Thanks to my 4-year-old for reintroducing “fresh” into my vocabulary over the past month - this word can be applied to food with no condiments, leaves with no mud on them, a shirt with no paint stains…and 360-odd days with only imagined outlines of requirements, ours to design.
Over the holiday break, I resisted the urge to take my pile of unopened mail along in my bag. At one point, we ended up serendipitously at the Salty Dog brewery in South Portland, Maine with a friend. I’ve been there before, just once - 8 years ago, same time of year, very different season of life, hosted by a group of people who had children living with cystic fibrosis in the age before Trikafta, spending their money and time to meet with two upstart kids - one young and one old - who believed they could bend the curve toward faster, better care with carefully-collected insights from these same folks.
For the past 2 months, these families and their clinicians had been testing the very first live version of Folia, a web app using the Javascript template Gentellela Alela for a design, collecting info from home on treatments used, how their kids felt, and how things were changing over time. Their first feedback: we have too many treatments to individually record, 18 button clicks is too many - you need to condense them into time-periods - Breakfast Treatments, Afternoon Treatments, Evening Treatments - and so our first iteration, featuring Bundled Treatments, was born. These parents had no need to spend this time and lend their help, with very low likelihood of enduring change to their lives - but for some reason, they were willing to believe in us.
And the belief of those 15 people propelled us for a year.
Then we blinked - and we had 200 families managing CF on the platform, collaborations with not only Maine Medical but also Vermont, Dartmouth, and Dell Children’s in Austin, and momentum. Mary Ellen, an amazing clinician leader in Maine, invited us to present at their annual meeting in Augusta - and in the cafeteria there, she mentioned the need for a real-world study on the effectiveness of Trikafta, the brand-new, promising disease modulating therapy for CF. She promised to connect me with the CF Foundation team working on the concept, and this was the doorway to our first regional study (thanks, St. Louis CF clinics!), then our first national study (HERO-2), then our second condition - sickle-cell disease. And on and on, all from a meeting with some very generous folks.
Over the past eight years since that evening with Ted, Lynn, and crew, Dan and I have pushed ourselves hard to pull together an enduring, mission-oriented, truly helpful company out of the original concept - that the organized, structured knowledge of family caregivers and individuals living with complex chronic conditions is the missing piece to make healthcare make sense, and fast, without headache.
It has been rewarding, honestly incredible on some days to see our idea become a real tool being used to inform the care of actual people looking for better answers to difficult chronic conditions- but also, so hard.
We’ve been tired. Luckily, we have help now - a crew of long-time users, industry partners, financial backers, clinicians, and dozens of incredible team members who have taken up this mantle with us. And we are wiser now - we know where the river leads through the mountains; we’re building boats together rather than battling the uphill path alone.
We are lit by the fire of knowing, with certainty earned through years of proving our mettle by collecting new, important information on eight different complex chronic conditions and how people are reacting to treatment - that we are actually helping, bending the curve surrounded by our like-minded friends.
Together with each family that takes a chance on Folia, we are forging a simpler, scientific, anti-paternalistic, patient-driven healthcare process that we can be proud of - to achieve care that feels like a relief rather than a massive, existential frustration for people who are already hurting.
We’re ready, and justly prepared, to be unafraid of forging ahead to the next level of making healthcare make sense. It seems important now to take a deep breath and approach the next stretch of the river with the clearheaded, unabashed optimism that we started with, those years ago in Maine. Here’s to the power of dreams and friends - and to the potential of a brand new, fresh year.