Posted inWritten by Kitty Khaos
SSW – The Cat Witch Mysteries, Tale 1
A short story about a girl and 3 witch sisters.
Posted inCF & Organization
Pre-School to School Aged Strollers
When you are the parent of a child with an invisible illness you know the struggles of parent shaming regarding school aged kids and strollers. Don't let the haters hold you back from getting the right stroller for your big kid!
Kids with CF often get winded, and dehydrate faster than the average. A stroller provides them with a safe place to take a break and recuperate.
Posted inCF & Family Life
What to bring to someone in the Hospital
Living the CF life many times also means you are living a Hospital life. So…
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 function.
Here is a link to the full article > Why do some patients live longer than others?
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 function.
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.
FDA Approves Ivacaftor for Five Splice Mutations
The U.S. Food and Drug Administration (FDA) approved the use of ivacaftor (Kalydeco®) today for people ages 2 and older with cystic fibrosis who have at least one of the following five splice mutations: 3849+10kbC->T, 2789+5G->A, 3272-26A->G, 711+3A->G, E831X.
Full Information Here
This second one is for her mutation!
Positive Early Study Results for Next-Generation CFTR Modulators
New data show positive results in individuals with a single F508del mutation as well as people with two copies of F508del and support continued development of triple combination therapies.
FDA Approves Ivacaftor for Five Splice Mutations
The U.S. Food and Drug Administration (FDA) approved the use of ivacaftor (Kalydeco®) today for people ages 2 and older with cystic fibrosis who have at least one of the following five splice mutations: 3849+10kbC->T, 2789+5G->A, 3272-26A->G, 711+3A->G, E831X.
Positive Early Study Results for Next-Generation CFTR Modulators
New data show positive results in individuals with a single F508del mutation as well as people with two copies of F508del and support continued development of triple combination therapies.
Posted inCF & Fundraising
Cystic Fibrosis Awareness Facts
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.
Posted inWritten by Kitty Khaos
SSW – The Old Man & the Dragon Fruit
Once upon a time there was an old man that lived in the desert. He…
Posted inCF & A Healthly Life
What’s in a Mask?
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.
Posted inWritten by Kitty Khaos
SSW – Volcanoes
Once upon a time there was a person, and it was a sunny day. The…