Caregiver Chronicles The Folia Health Research Team Caregiver Chronicles The Folia Health Research Team

Parenting in the time of Coronavirus: What CF can teach the general public

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.

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Caregiver Chronicles The Folia Health Research Team Caregiver Chronicles The Folia Health Research Team

Giving back and telling the whole story with Folia Home Reported Outcomes (HROs)

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.

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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.

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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.

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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. 

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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. 

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