Our 2018 Great Strides adventure.
Just wanted to share this cool study I read this evening, scientific advancements in gene discovery is so cool! Sequencing the genes of these five Boston Children’s patients — a cohort known as “long-term non-progressors”— the researchers found a set of rare and never-before-discovered genetic variants that might help explain their longevity and stable lung […]
I know it’s been a while since I’ve shared some new information that has been in the Drug Pipeline for CF. This first one isn’t for Little Miss Khaos (her mutation is DDF508) but it is great news for those that use Kalydeco! You can learn more about all of the drugs going through studies […]
Here is a list of Cystic Fibrosis Facts that you can use in raising awareness. I will continue to add facts as I discover more, if you have any suggestions feel free to comment below and I will add it! You can see the facts below in a sharable format on our Facebook page.
Last week the CF Foundation released a statements to all clinics letting everyone know their official stance on a popular mask. The Vogmask. Many were left confused and annoyed because these adorable masks have made getting the angstiest of children to wear them with ease.
I wanted to share two great reads regarding CF advancements that have happened recently.
The hardest part for us when we decided to start our Great Strides team was picking a team name. I wanted to create a list to help others come up with team names, if you have any to add to this list feel free to comment and let me know.
This is your one stop place for fundraiser ideas to help raise money for your Great Strides team! If you have any ideas that have worked for you that aren’t on this list comment and let me know! It will continue to grow over time as I discover more.
One of the questions I see asked often in the CF community is should we invest in a Salt Lamp, or go to a Salt Cave? Should we use table salt or a different version? Is living at the beach better for CFers? To give you a quick back ground on why Salt related questions […]
We received our first positive culture for Pseudomonas, it felt surreal having dreaded that culture for 5 years now. Part of me feels like I should go cleaning crazy around our house and replace everything, but I know logically that it is every where and it was only a matter of time.You can read more […]