Cystic Fibrosis News Today Forums | Lizzy | Activity https://cysticfibrosisnewstoday.com/forums/members/lizzy/activity/ Activity feed for Lizzy. Mon, 06 Apr 2026 09:54:45 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 b1276946c8e6126996ff7e7a3ef80e18 Lizzy replied to the discussion The other 10%.... FDA approves Trikafta in the forum CFTR Modulators https://cysticfibrosisnewstoday.com/forums/forums/topic/the-other-10-fda-approves-trikafta/#post-13896 Thu, 24 Oct 2019 17:55:57 -0500 Reply to The other 10%.... FDA approves Trikafta

Thanks for replying Jenny. Coincidentally a deal on Orkambi/Symkevi was agreed today in England. So much good news, after too long a wait.

I will be shouting loudly so the remaining 10% are not forgotten too. Just blogged about this here…

http://mymerrymolyworld.blogspot.com/

Have a great day, and good luck on the new drugs x

]]> 2ef6df9e2ee6af6919b8e2cc0a540681 Lizzy replied to the discussion The other 10%.... FDA approves Trikafta in the forum CFTR Modulators https://cysticfibrosisnewstoday.com/forums/forums/topic/the-other-10-fda-approves-trikafta/#post-13851 Tue, 22 Oct 2019 16:52:14 -0500 Reply to The other 10%.... FDA approves Trikafta

My son (14) is one of the 10%. He has two, rare, severe (class 1) mutations.

I’ve been to protests in London as NHS England has yet to approve Orkambi, let alone a triple combo, despite these not being a solution for Isaac. It’s certainly a very wonderful and exciting time for the CF community! But I would be lying if I said that I wasn’t… Read more

]]> 7365059f801b7b9d373659423311ba7c Lizzy replied to the discussion Mum of an awesome teen with CF in the forum Introductions https://cysticfibrosisnewstoday.com/forums/forums/topic/mum-of-an-awesome-teen-with-cf/#post-11514 Tue, 05 Mar 2019 20:11:48 -0600 Reply to Mum of an awesome teen with CF

Hi Luisa, the link you have given above for parents and caregivers does not work for me…. is this forum now open? Thanks!

http://mymerrymolyworld.blogspot.com

lizzy x

]]> fe734a620a73e5b789fbacbd56e5e419 Lizzy started the discussion Mum of an awesome teen with CF in the forum Introductions https://cysticfibrosisnewstoday.com/forums/forums/topic/mum-of-an-awesome-teen-with-cf/ Sat, 12 Jan 2019 17:22:06 -0600 Mum of an awesome teen with CF

Hi, I am Lizzy. I have 3 kids, and my eldest, Isaac, has CF. We had IVF and pre-implantation genetic diagnosis to conceive our daughters, ensuring that they do not. We live in the U.K.

Isaac has had a rough year, six courses of IVs, and a spell in PICU. He never complains though – I am in awe of him! I write a blog about us… Read more

]]> 78ad17e2f71af401d68eeb73c9a82d14 Lizzy became a registered member https://cysticfibrosisnewstoday.com/forums/activity/p/255/ Fri, 11 Jan 2019 20:26:03 -0600 2