The Folia Blog
An incredible milestone for the Folia community
We are excited to share an exciting milestone: you have answered more than 100,000 questions!
The 100,000 questions represent a body of knowledge that was previously inaccessible to clinics and unable to be used by researchers to find a cure for cystic fibrosis. Your knowledge matters.
Your knowledge matters — and now we’re doing something about it
Let’s harness the power of your many observations and take the next big step toward data-driven care.
Helen and Nell, and how tracking can lead to better outcomes
Helen is the mother of seven children, several of who have chronic conditions. One of her children happens to be Folia Health’s founder and CEO, Nell Meosky Luo. This inaugural vlog chronicles how Helen’s tracking of her oldest son’s home reported outcomes led to better care and was happened to provide the inspiration for the birth of this company.
What we’re missing
Medicine’s Machine-Learning Craze Is Only Useful If It’s Built on a Decent Data
Amy, on advocating for a methodical approach to CF
This winter, we’re excited to be speaking with caregivers and patients who are using Folia to advocate for themselves, and to move closer to the best possible care for themselves or their loved ones.
Sarah, our intern from the MIT Sloan School of Management, was kind enough to conduct this interview with Amy - a mom who is advocating for a methodical approach to managing her son’s CF.
Patient feature: Celeste, who can't wait for 2019
Celeste is a busy, happy UT Austin student studying public health. She’s also a CF patient, and a Folia intern. In this post, Celeste shares her plans for a healthy, successful, and exciting 2019!
System Failure
Breck, mom of 3 including a 3rd-grade CFer, generously shared a post on how she has learned to manage the overwhelming set of to-do’s that come along with this disease.
Brett & Kelby, brand-new parents
Hello. We are Brett and Kelby Nicolas.
Our son, Alexander Nicolas, is 11 months old and was diagnosed with Cystic Fibrosis at 10 days old by the new born screening test. He has mutations DF508 and 2789+5G>A.
Kate, on life with three beautiful girls, military moves, and CF
Kate and her three daughters recently moved to Connecticut due to her husband’s position in the Navy. Her youngest daughter, Lucy, was diagnosed before birth with CF. Now 7 months, Lucy has the biggest smile, she’s starting to crawl, and Kate is in the process of figuring out how to work CF treatments into her family’s life.
Meg, on why she loves her job
We had a great time speaking with Meg Hall, a social worker at Maine Medical who focuses on supporting cystic fibrosis families in both the child and adult clinics. Meg has had the unique experience of being the connector between the families and the healthcare system, and joined us this week to tell us all about why she loves her job.
Jenna, on enjoying every moment
Our first featured caregiver of 2018 is Jenna, Maine-based mom to Kate, a three (almost four!)-year-old living with cystic fibrosis. Jenna and her husband, Cort, have already become fixtures in the Maine CF community.
Lynn, on managing CF as a team
This week in the Caregiver Chronicles, we share the story of Lynn, who has two children living with cystic fibrosis. Lynn and her husband Josh have managed to balance the demands of a double treatment schedule with everything else that comes along with raising two elementary school-aged kids.
Susan & Ted, moving past CF to find a beautiful life
Susan and Ted are a Portland, Maine-based couple with two grown daughters. Hogan, their younger daughter, was diagnosed with CF at age 3. She's now a thriving college student who has lived a remarkably normal life, not defined by her disease. In this post, Susan and Ted share memorable moments of their CF parent journey, and everything that they have learned along the way.
Chad, a father on a mission
Chad is an incredible dad and superhero caregiver who donated part of his liver to his infant son. He tells us his story of learning to navigate doctors and insurance companies to get his son the best care possible.
Cindy, an incredible autism mom
Cindy is a physician with 5 kids, ranging in age from 8 to 19, and is a practicing physician. Her oldest, Marcus, was diagnosed with autism when he was a toddler. Since then, Cindy has become an expert at helping Marcus fit in with his peers and live as normal a life as possible.
Mercedes, breaking down barriers for her daughter
June 19, 2017
Mercedes is a full-time professional and mom of two children, ages 2 and 5. Her oldest, Mila, has Down Syndrome, and Mercedes has spent the past five years becoming an expert in helping her daughter to meet and exceed all expectations set for her.
Helen, mom of 7 and superhero caregiver
June 19, 2017
Helen and her husband, Paul, have seven kids, several of whom have chronic conditions. Their oldest son, Paul, has Common Variable Immune Deficiency, a condition that makes it difficult for him to fight off infections on his own. This interview will focus on Helen's experience learning to navigate the care for Paul's condition.