Blog

I’ve been a runner for most of my life. After having to drop out of three previous marathons because of my CF, I was finally ready to run this year’s Boston Marathon.

When I scroll through my social media accounts, it’s hard not to compare myself to other people and feel like I could have accomplished so much more had it not been for my cystic fibrosis. Instead of getting depressed, I now rely on therapy, positive affirmations, and being kind to myself to preserve my mental health

I was pleased to see that the third plenary session at the North American Cystic Fibrosis Conference included patient stories that reflected the diverse experiences of those with cystic fibrosis. I also like that it focused on the need for bold action to help those who can't benefit from modulators and centered on the full ecology of treatment innovations that can benefit every person with CF.

After watching the second plenary of the 2021 North American Cystic Fibrosis Conference, I was incredibly impressed by the level of support the Cystic Fibrosis Foundation is providing to the development of the next generation of therapeutics. Developing genetic therapies -- especially those as complex as gene editing -- will take a long time and a lot of collaboration.

The COVID-19 pandemic brought great challenges to cystic fibrosis care. As Michelle Prickett showed during plenary 1 of this year's North American Cystic Fibrosis Conference, CF care teams adapted to provide care and keep us safe. It also shows where CF care may be headed in the future.

As Evan's mom, I have to constantly decide where to invest my time, especially when it comes to providing feedback. So, when offered the chance to turn my survey fatigue into something that would actually make a difference and be less of a hassle to do, I jumped at it.