My Great Strides Story
Jacqueline Malyk
Jacqueline Malyk
Striding for Gwen:
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
Our Great Strides Story
Join our team to help make a difference in the lives of all people living with CF. To become a member, click the "Join this team" button. From there, you can donate and start fundraising.
As a member of our team, you are joining a growing community of people committed to finding a cure for cystic fibrosis. Together, we can make CF stand for Cure Found.
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
Our Great Strides Story
Join our team to help make a difference in the lives of all people living with CF. To become a member, click the "Join this team" button. From there, you can donate and start fundraising.
As a member of our team, you are joining a growing community of people committed to finding a cure for cystic fibrosis. Together, we can make CF stand for Cure Found.
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