Walk with our team to Cure Cystic Fibrosis
Gwen’s We’ve Got You Group
Gwen’s we’ve got you group
Striding for Gwen:
Sunday April 27
Huntington Park Columbus Ohio
CF awareness
Gwen is 7 years old. Active and a beautiful soul inside and out. She loves dance classes, swimming, gymnastics, playing, friends , family, cats, so many things. She is an incredibly funny person with a great sense of humor. A joy to be with.
Gwen was approved early for Trikafta we had some great results in regards to sweat chloride tests. It is all too soon to see any other impact but we are hopeful that this drug will work with her. There’s a new modulator (Alyftrek) that was just approved by the FDA in January 2025 which would take place of Trikafta if her clinic/insurance approves her for this medication. This would be one pill a day instead of 3 three and not needing to take the medication with fat. Still unsure of the side effects as it is a new drug. With any of these modulators I worry because of how strong they are, but we have to outweigh the benefit to her overall health.
Vertex has priced Alyftrek at a list price of $370,269 per year, which is 7% higher than Trikafta’s annual wholesale acquisition cost of $346,048. Just another stress to put on us.
While classmates and others would get over a cold or other virus fairly easily, hers would linger for weeks. That’s the difference with having Cystic Fibrosis. The thick mucus in her body makes an easy breeding ground for bacterias to take over. She’s missed days of school, dance classes and fun things. Praying that each virus with nasty cough isn’t damaging her young lungs. Each illness she was put on antibiotics in the hopes of protecting her lungs. CF is so different. Nothing like I’m used to at all, or rules you’ve learned with illnesses over the years. She has been able to go down to one 30 minute vest treatment a day because of all of her results from being on Trikafta (sweat chloride, chest X-rays, ct scans). When sick we have to increase up to three times a day which she often hates.
Lots of stress and worry for her parents. Huge amount of daily things to keep her as healthy as possible, all while being an active 7 year old.
Life with CF is no joke.
No sympathy needed please. Just raising awareness of what Cystic Fibrosis really is like.
Prayers for a cure
There is currently no cure for cystic fibrosis and too many people with CF die young. I’m walking to help change that reality.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
We invite you to take part in Great Strides by joining our team. We promise, you belong here! This event promises to be a fun-filled day where you can help advance the care and research needed to cure cystic fibrosis. By walking with us, you’ll enjoy not only the natural camaraderie (yes, lots of laughter!), but the important impact we are making together.
While the CF Foundation has made incredible progress, not everyone with CF can benefit from existing therapies and we still need a cure. This will require time, funding, and persistence – but with you on our team – we are ready to go the distance.
Our team is committed to providing every person with CF the opportunity to live a long, healthy life. Will you join us?
Sunday April 27
Huntington Park Columbus Ohio
CF awareness
Gwen is 7 years old. Active and a beautiful soul inside and out. She loves dance classes, swimming, gymnastics, playing, friends , family, cats, so many things. She is an incredibly funny person with a great sense of humor. A joy to be with.
Gwen was approved early for Trikafta we had some great results in regards to sweat chloride tests. It is all too soon to see any other impact but we are hopeful that this drug will work with her. There’s a new modulator (Alyftrek) that was just approved by the FDA in January 2025 which would take place of Trikafta if her clinic/insurance approves her for this medication. This would be one pill a day instead of 3 three and not needing to take the medication with fat. Still unsure of the side effects as it is a new drug. With any of these modulators I worry because of how strong they are, but we have to outweigh the benefit to her overall health.
Vertex has priced Alyftrek at a list price of $370,269 per year, which is 7% higher than Trikafta’s annual wholesale acquisition cost of $346,048. Just another stress to put on us.
While classmates and others would get over a cold or other virus fairly easily, hers would linger for weeks. That’s the difference with having Cystic Fibrosis. The thick mucus in her body makes an easy breeding ground for bacterias to take over. She’s missed days of school, dance classes and fun things. Praying that each virus with nasty cough isn’t damaging her young lungs. Each illness she was put on antibiotics in the hopes of protecting her lungs. CF is so different. Nothing like I’m used to at all, or rules you’ve learned with illnesses over the years. She has been able to go down to one 30 minute vest treatment a day because of all of her results from being on Trikafta (sweat chloride, chest X-rays, ct scans). When sick we have to increase up to three times a day which she often hates.
Lots of stress and worry for her parents. Huge amount of daily things to keep her as healthy as possible, all while being an active 7 year old.
Life with CF is no joke.
No sympathy needed please. Just raising awareness of what Cystic Fibrosis really is like.
Prayers for a cure
There is currently no cure for cystic fibrosis and too many people with CF die young. I’m walking to help change that reality.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
We invite you to take part in Great Strides by joining our team. We promise, you belong here! This event promises to be a fun-filled day where you can help advance the care and research needed to cure cystic fibrosis. By walking with us, you’ll enjoy not only the natural camaraderie (yes, lots of laughter!), but the important impact we are making together.
While the CF Foundation has made incredible progress, not everyone with CF can benefit from existing therapies and we still need a cure. This will require time, funding, and persistence – but with you on our team – we are ready to go the distance.
Our team is committed to providing every person with CF the opportunity to live a long, healthy life. Will you join us?
JAN
9
9
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