Did You See This NACFC Talk? Part 2
Last updated: February 2023
The range of topics and novel presentations at the 2022 North American Cystic Fibrosis Conference (NACFC) in Philadelphia, PA was impressive. I’m sure it was exciting for the in-person attendants to be back together again since the pandemic sharing ideas and their research.
As I mentioned in part 1 of this follow-up, I felt the way the NACFC operated this year for virtual attendants was particularly disappointing. It just didn’t make sense to cut back on the accessibility of the presentations when people with CF are restricted from attending in-person. I’m sure there’s a reasonable and financial explanation but I do hope next year the conference operates differently to further engage the CF community. Nonetheless, after reviewing the presentations uploaded to Youtube I was able to complete the wrap-up.
Here is part 2 of my NACFC topic wrap up for the 2022 conference. Enjoy and share your favorites in the comments below!
Did you see this?
4.Effects of COVID on overall CF wellbeing
Within the various presentations, there wasn’t much data on long term effects of COVID on overall CF wellbeing. My guess is that a bulk of this data was presented last year. However, there was a focus on the lessons learned from COVID in relation to decentralized research studies and off-site monitoring like home exercise programs or home sputum culture kits. This particular talk can be viewed on the Cystic Fibrosis Foundation's YouTube channel.
5. Update on CRISPR technology
One of the more surprising (and confusing) points of the NACFC were the updates on gene delivery and gene editing technology and mRNA technology. I still am trying to wrap my head around the difference between the two therapies. However, CRISPR technology was really overshadowed by the mRNA splicing technology especially in the second plenary. It’s really fascinating and you can dive into it by visiting the Cystic Fibrosis Foundation's YouTube channel.
6. Research on CF body images issues
One of the most unexpected products of Trikafta is the weight gain and body image changes for a lot of people with CF. For the first time in history, people with CF are changing their lifestyles to manage weight gain and lose weight. Presentations detailed this change in the CF landscape as well as different ways to manage weight gain like anti-diet culture, medication, surgery, and exercise. You can see these presentations, along with the others in this series, on the Cystic Fibrosis Foundation's YouTube channel.
7. Fertility for men with CF
I feel like the fertility needs of men with CF have been overlooked and not openly discussed for far too long. I was really eager to see any information on this shared at the NACFC. Thankfully, a few presentations discussed why infertility occurs in men with CF, when to discuss infertility with patients as providers, and what assisted reproduction options were available to help men with CF father children. I look forward to this subject being expanded in the years to come.
What types of discussions do you wish to see at next year's NACFC? Share with us below!
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