What is it actually like to participate in a clinical trial? What do other people who have participated in trials think about the whole ordeal?

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.

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. 

Emily, an adult living with CF, talks about her changing relationship with exercise

Celeste talks about her experience traveling across the world while managing her cystic fibrosis.

Celeste writes about her experience with transitioning to college.

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!

The future of precision care is up to you, and it’s easier to help than you think.

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.

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.

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!

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.

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.

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.