Did You See This NACFC Talk? Part 1
I look forward to the North American Cystic Fibrosis Conference (NACFC) every year. So much so that this year I devoted a previous article to the topics I hoped would be covered at the conference. When the conference began in October, there was a wide variety of discussions from different disciplines and providers from all over the world.
Lots of talk on how Trikafta continues to change the CF landscape for many individuals years later and an update on the CF Foundation’s vision to successfully provide highly effective treatment–and ultimately, a cure–for all people with CF. Interestingly enough, discussions on topics and issues new to the CF community really piqued my interest like weight management and control and how to best support parents with CF. Things are changing in our community and it’s nice to be along for the ride!
NACFC accessibility disappointment
To much of my dismay, I was disappointed in how the conference operated for virtual attendants this year. In the past, I LOVED having real-time access to the plenaries and other smaller, less populated talks. It made me feel involved in these important discussions, not as if I am reading a summary of a conversation that has already happened in my own community. This year, things were done a bit differently. And if I am being honest, not entirely to the benefit of the CF community.
Unfortunately, only the larger plenaries and a handful of small talks were available to watch in real-time. A couple weeks after the fact, the talks were uploaded to YouTube so that viewers could gain access. In order to write the follow up to my original article I had to wait and then take the time to sort through and view ….all 93 of them. It just wasn’t as CF-esque friendly considering we are a community based solely online. I hope the CFF considers an alternative next year to making the conference more accessible for the population it’s intending to serve.
Did you see this?
1. Support for parents with CF
Support for parents with CF seems to be a hot topic considering there’s more people with CF pursuing parenthood than ever before. Thankfully, the NACFC acknowledged this shift and had multiple sessions about how to best support and care for people in this stage of life. A wide range of topics were included such as maternal outcomes for women with CF taking Trikafta; CF, pregnancy, and urinary incontinence; experience and support needs of parents with CF, male factor infertility and so forth. Some of those individual talks can be viewed on the Cystic Fibrosis Foundation's YouTube channel.
2. Novel treatments coming down the pipeline
As usual, one of the plenaries had a big focus on new treatments coming down the research pipeline. I really enjoy seeing the visual representation of the treatments in various research phases! It gives me a lot of hope for the future. An update on traditional CF therapies, highly effective modulator treatment (HEMT), and the path to the cure: gene delivery and editing and mRNA strategies were eloquently presented.
For any CF research nerds out there, you can also see the breakdown of novel treatments by anti-inflammatories, anti-infectives, mucociliary clearance, restoring CFTR function and GI-related treatments on the Cystic Fibrosis Foundation's YouTube channel.
3. Effects of HEMT on children of parents with CF especially in lactation
During the presentations, I noticed there was some brief mention about the effects of HEMT on children of parents with CF, but not much information. A case study was discussed about a child positive for CF being exposed to Trikafta in utero and experiencing remarkable positive therapeutic effects. It was truly fascinating and prompted a lot of questions in my mind! However, no data about the effects of HEMT and lactation was specifically presented.
I’m assuming more data on this specific research question will likely be shared in next year’s conference when the MAYFLOWERS study, a study looking at CF pregnancies, lactation, and beyond, is completed. These presentations can also be viewed on the Cystic Fibrosis Foundation's YouTube channel.
Stay tuned for part 2 of this NACFC wrap-up. Were you able to watch some NACFC presentations? Which ones did you find particularly interesting? Chat with other CFers in the comments below.
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