The Folia Blog
Celeste's Transition to College
Celeste writes about her experience with transitioning to college.
Why I joined Folia
Christina, the newest member of the Folia team, shares her experience as a caregiver and what moved her to join the company.
4 Foods to Help You Thrive This Summer
We know that digestive health is an important part of managing many chronic conditions. In fact, more than half of our users track symptoms and behaviors related to their diet! Here at Folia, our team has been loving this summer weather and all the fun that accompanies these warmer months. And if you’re managing a chronic condition, there’s no reason you can’t either.
Ron, on determination, faith, and following his path
We are excited to feature Ron’s story of how his cystic fibrosis diagnosis in his 40s answered some questions he had his whole life. Thank you, Ron, for inspiring us with your message of positivity and for your service to our country and your community!
Why we don’t like the term “treatment adherence”
At Folia, we don’t like the term “treatment adherence.” Yes, it’s a standard term across the healthcare ecosystem, and is definitely an improvement on the old “treatment compliance.” However, the concept of adherence still suggests a paternalistic line of thinking, that people who don’t follow prescribed treatment plans must be irresponsible, lazy, defiant, or indifferent.
How you can help CF research - right now
The future of precision care is up to you, and it’s easier to help than you think.
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.