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CF Patients Improve Lung Function with Elexacaftor Combo, Data Show

Jan 02, 2030 04:44 am | Cystic Fibrosis News Moderator

Replies: 0

Adding elexacaftor to tezacaftor and ivacaftor leads to marked improvements in lung function and quality of life in people with cystic fibrosis, data show. Read more about it here.
What do you think of this news?

How Big Is Your Village?

Mar 04, 2020 04:50 am | Bailey Vincent

Replies: 0
“How are you doing?” my colleagues asked yesterday, while rushing in to work.
“Totally psycho,” I replied… and I super meant it.
Yesterday was an ordinary weekday- homeschooling my girls, writing a column, doing admin work for my dance company, and attempting to prepare for another late night at the theater- but somehow, I felt completely “off”. My girls were arguing more than normal. My body was sluggish and misbehaved. Everything was taking twice as long as it normally should… and I honestly cracked. In no uncertain or pretty terms, I had a mini temper tantrum before rushing off to get my daughters where they needed to be (“I don’t have enough time!” sort of thing).
Yes, I didn’t feel well and didn’t have enough time to “listen to my body”, as we are told to do, but… I also had no alternative. There is no other person to tag in to take over as mother. There is no other person to get me from Point A to Point B. There isn’t even someone to get me to or from my doctor appointments or surgical post-ops. If my body can’t make it happen… It doesn’t happen.
Here is my question today:
How much of a village do you have?
Are we somehow less if we don’t have a big one? I have an amazing group of friends and family, and love the loves in my life, but my life is still not built like social media should have us believe sometimes.
It takes a village… but sometimes we need a bigger one.

Synspira Therapeutics, CFF Agree to Support Development of SNSP003

Mar 04, 2020 02:26 am | Cystic Fibrosis News Moderator

Replies: 0
The Cystic Fibrosis Foundation reached an agreement with Synspira Therapeutics to support further development of SNSP003 to treat malabsorption syndromes. Read more about it here.
What do you think of this news?