Coronavirus has created a new normal: social distancing, childcare disruptions, self quarantining, constant hand sanitizing, and risk levels changing by the hour. However, many of these experiences are the everyday reality of people living with underlying health conditions.

Myra, mom to two children with CF, shares some of the wisdom she has acquired over the years, and what she hopes people take away from this experience to help everyone live a healthier life.

Breck, a CF mom, shares practical tips on navigating coronavirus with an underlying health condition and surviving a self quarantine.

Lynsey, mom to 18-month-old Landon, shares how tracking on Folia ends each day with a boost of positivity, enables her to precisely tell their whole story, and provides a way to give back to the CF community. She is hopeful about the future of healthcare which taps into the perspectives of patients and caregivers at home.

Ashley is mom to Finn, who was diagnosed with PI in April 2019. In this blog post, she shares with Rebekah her initial reactions to Finn’s diagnosis, drive to the appointments, Infusion Thursdays, and the village of support. 

Christina, Head of Growth of Folia Health, shares about her family’s recent hospitalization.

Maureen Meosky is the sister of Nell and Paul and recently moved to Boston to start her college career. She joins us today to give a family member’s perspective on rare disease and today’s hearing on Bill H.1934.

Breck, a CF mom and author of In It for Bennett: Our Journey with Cystic Fibrosis, has been part of the Folia community since June 2018. In this blog post, she shares with Rebekah their one-year update, advice for new families, and tracking in sickness and health. 

Christina, the newest member of the Folia team, shares her experience as a caregiver and what moved her to join the company.

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.

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.

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.

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 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.

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. 

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 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 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 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.

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.