Intro

What is cystic fibrosis?

Can cystic fibrosis be cured?

How is cystic fibrosis diagnosed?

Can I carry cystic fibrosis without realizing it?

What are the effects of cystic fibrosis?

What is the treatment for cystic fibrosis?

How do therapy vests work?

Can I have children with cystic fibrosis?

Is lung transplantation a possibility?

What are the symptoms of cystic fibrosis?

Treatments for cystic fibrosis

What is the future for cystic fibrosis?

What is Cystic Fibrosis (CF)?

What are the symptoms of CF?

How severe are CF symptoms?

What is treating CF important?

Treatment options for CF

What is a CFTR modulator?

CF Infant Care: First Year of Life Living with Cystic Fibrosis

My parents have definitely played a big part of taking care of me.

I think cystic fibrosis guided my career choice

NACFC Highlights Webinar

What is the pathway of CF disease?

What is the latest update on modulator therapy?

What was the result of the trial testing whether those with an N1303K mutation can benefit from Trikafta®?

What did a study show about the effect of discontinuing either dornase alfa or hypertonic saline for those taking modulators?

What are genetic therapies and how do they work?

What is the latest news on clinical trials for genetic therapies for CF?

What is the latest research on CF infections?

What is the latest mental health research?

What is the latest research on cannabis use in CF?

Does Trikafta have an effect on nighttime use of oxygen?

What are the new guidelines in post-transplant care?

What are the social risk factors for disparities in CF outcomes?

Will people with CF who start modulators when they are young recover their fertility?

What research is happening for women’s sexual and reproductive health?

What do we know about memory and brain fog when on a modulator such as Trikafta?

Is there any research on discontinuing chest physical therapy or vest therapy once you go on modulators?

Have there been studies looking at anti-anxiety medications, such as Lexapro, for possible interactions with modulators?

Is the CRISPR technology that is used to treat sickle cell disease being considered to edit CF genes?

Are there any intentions on developing a modulator for infants or newborns?

Are there any modulators in the works for those who do not have an F508del mutation?

How would you be able to assess potential mental health challenges in infants and young children if they were to take modulators?

As people need increased specialists and general medical care, is there any talk of building a larger network of interdisciplinary teams? Do we know if we are going to be adding roles?

Introduction

What does it mean if my newborn’s screening test is positive?

Why aren’t all my children affected with cystic fibrosis?

Is one gender more likely to be affected by cystic fibrosis?

Is cystic fibrosis only diagnosed in children?

How will a cystic fibrosis diagnosis impact my life?

How does cystic fibrosis affect my ability to have children?

How can I be the best partner to my medical team?

Ending

Why do we take CFTR enzymes?

What are the risks of having cystic fibrosis?

What are the medications for cystic fibrosis?

T is for tablets

W is for Why Me?

Paula Sommer

Kat Scaife

Michaela Regan Oystic Fibrosis Trust

Charlie Porter Oystic Fibrosis Trust

Jess Lee Medicines Discovery Catapult

Dr Jamie Duckers

Luke Twentyman CF Ambassador

COVID-19 and CF update from Michael P. Boyle, MD

Is it safe to send someone in my household back to school if they, or someone else in the house, has CF?

Can you speak about the risk of sending someone in the household back to school, even if the individual with CF is staying home?

What are IEPs and 504 plans? When would I request one, and how would they help?

What kind of accommodations should I be asking for – either for my student, or for myself/partner/spouse – as a school employee?

What about college?

Is it safe for people with CF to wear masks for a long time? Are masks risky?

Are there extracurricular activities that would be safe for kids to participate in, even if they are doing distance learning?

How should we help our kids with anxiety about returning to school?

Is it safe to join up with another family for playdates or other activities?

Is distance learning something we would request through a 504 plan if our school isn’t offering it? Do private schools have to offer these accommodations?

How can we help kids who are distance learning to stay connected to their teachers and to their peers?

At what point should we pull a child or teacher from school if someone in the school tests positive?

Are there additional precautions you’d recommend for teachers or other adults working in a school environment? How can they advocate for themselves and help others in their classrooms understand the risks?

Is there any concern about cleaning solutions used for sterilizing school environments being dangerous for kids with CF?

Intro

Welcome

How does cystic fibrosis affect the body?

GI Tract Pathologies

Severe liver disease

Mucociliary Clearance and Cystic Fibrosis

Abnormal Chloride Transport

What is a nonsense mutation?

Potential therapy for cystic fibrosis

Conclusion