Having a baby spend a long time in the NICU is difficult. Here are some things I learned about how to deal with it.
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While waiting for another lung transplant, I learned that time is a wicked concept: there is so much of it, but never enough.
My wife and I opted for a surrogate to carry our child following her double-lung transplant. After five years of struggling with a bad surrogacy agency, we finally switched providers and found a surrogate who is now carrying our child.
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.
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.
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’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.
Being a parent to a child with cystic fibrosis is hard. You need to hear from someone else in your shoes that it’s OK to grieve for the life you thought you were going to have with your child.
As a community, we are very good at masking and keeping a safe distance to reduce risk from germs. And just like we have highly effective therapies to treat CF, we now have highly effective vaccines to protect our kids from COVID-19.
Coping with cystic fibrosis as a child led to depression. Creativity -- especially singing -- helped me find myself and led to my auditioning for The Voice Australia.