Cystic Fibrosis News Today Forums | Seamus Conlan | Activity https://cysticfibrosisnewstoday.com/forums/members/seamus-conlangmail-com/activity/ Activity feed for Seamus Conlan. Mon, 06 Apr 2026 09:54:45 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 20d8d9d3ec241728ca98cadbdbf500f0 Seamus Conlan replied to the discussion Anxiety associated with being denied necessary medication in the forum Mental Health https://cysticfibrosisnewstoday.com/forums/forums/topic/anxiety-associated-with-being-denied-necessary-medication/#post-15182 Mon, 29 Jun 2020 17:43:21 -0500 Reply to Anxiety associated with being denied necessary medication

Kalydeco just got EU commission approval for the Cystic Fibrosis R117h gene alteration – children (please see below):

Kalydeco Approved in Europe to Treat Children with R117H Mutation

This is incredible news for my family and in particular my son Zack.

It is hard to find… Read more

]]> e69ccf58f0d59049bc84289520ada5ac Seamus Conlan 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-15181 Mon, 29 Jun 2020 17:42:56 -0500 Reply to The other 10%.... FDA approves Trikafta

Kalydeco just got EU commission approval for the Cystic Fibrosis R117h gene alteration – children (please see below):

Kalydeco Approved in Europe to Treat Children with R117H Mutation

This is incredible news for my family and in particular my son Zack.

It is hard to find… Read more

]]> 7e67fc44575983a8d8917b16e7b5e931 Seamus Conlan 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-13936 Sat, 02 Nov 2019 00:24:03 -0500 Reply to The other 10%.... FDA approves Trikafta

The efforts of the Cystic Fibrosis Foundation are encouraging and the new focus on Path to a cure is trying to address one of EmilyKG’s concerns of doing things faster. The Foundation is challenging potential collaborators to submit proposals that will accelerate the pace of progress in CF drug discovery and development and intends to… Read more

]]> 105ffed36898cc2a9308a9265a8f8fbb Seamus Conlan 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-13935 Sat, 02 Nov 2019 00:23:28 -0500 Reply to The other 10%.... FDA approves Trikafta

I believe that funding is key here and all of the CF community must maintain focus on the 10% and follow the lead of the CF Foundation Lab which devotes more than half of its efforts to research focused on nonsense and other rare mutations. I believe the CF community more than any other group fully understand the complexities of CF and have… Read more

]]> 5adc582c5f2061b23ff163cb54ff8000 Seamus Conlan started the discussion Anxiety associated with being denied necessary medication in the forum Mental Health https://cysticfibrosisnewstoday.com/forums/forums/topic/anxiety-associated-with-being-denied-necessary-medication/ Mon, 30 Sep 2019 14:59:08 -0500 Anxiety associated with being denied necessary medication

My son Zack is currently on NG tube feeding in Temple Street hospital, Dublin, Ireland and will have a PEG inserted in September 2019 (this suffering would of course be unnecessary if the EMA allowed him access to Kalydeco as is the case in the US and Australia). Zack has the R117H gating gene alteration.

The European Medicines Agency… Read more

]]> 831022c36d58683a722a852c3500069c Seamus Conlan posted a new activity comment https://cysticfibrosisnewstoday.com/forums/activity/p/1430/#acomment-1439 Tue, 11 Jun 2019 10:12:19 -0500 Hi Tre,
When you get a chance to read the information I sent on, can you let me know what you think please? I would really like to get an objective opinion on this?

    In reply to - Seamus Conlan became a registered member ]]>         f85c9e1eb4f0af4df250339af9eb239f Seamus Conlan posted a new activity comment https://cysticfibrosisnewstoday.com/forums/activity/p/1430/#acomment-1438 Tue, 11 Jun 2019 09:10:28 -0500 My son Zack is starting on his CF journey and I hope to use the forum as a support system to allow me help Zack in whatever way I can.

      In reply to - Seamus Conlan became a registered member ]]>             fa649cb523a8e9520ccdad02fb41173a Seamus Conlan became a registered member https://cysticfibrosisnewstoday.com/forums/activity/p/1430/ Fri, 07 Jun 2019 21:55:07 -0500 3