@seamus-conlangmail-com
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Seamus Conlan replied to the topic Anxiety associated with being denied necessary medication in the forum CF and Depression and Anxiety 2 years ago
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 t…[Read more]
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Seamus Conlan replied to the topic The other 10%…. FDA approves Trikafta in the forum Trikafta: Triple Combination CFTR Modulator 2 years ago
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 t…[Read more]
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Seamus Conlan replied to the topic The other 10%…. FDA approves Trikafta in the forum Trikafta: Triple Combination CFTR Modulator 2 years, 8 months ago
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 allocate…[Read more]
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Seamus Conlan replied to the topic The other 10%…. FDA approves Trikafta in the forum Trikafta: Triple Combination CFTR Modulator 2 years, 8 months ago
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 most…[Read more]
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Seamus Conlan started the topic Anxiety associated with being denied necessary medication in the forum CF and Depression and Anxiety 2 years, 9 months ago
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 (EMA)…[Read more]
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Seamus Conlan posted a new activity comment 3 years ago
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? -
Seamus Conlan posted a new activity comment 3 years ago
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. -
Seamus Conlan became a registered member 3 years ago
Hi Seamus! Thanks for registering, I’m Tré, one of the forum moderators. What is something you’re really hoping to gain from the forums?
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?