Bryan White
As most of you know my son Rowland was diagnosed with Cystic Fibrosis (CF) when he was 6 months old. This was a shock to our little family. He was missed as part of the CA new born screening and we were actually very lucky to (thanks to my wife Cambrey who knew something wasn’t right) get him diagnosed when we did. We worked with our amazing CF care team and got the details about his specific CF variants. Unfortunately, he was not eligible for the life saving drug that had recently hit the market, Trikafta.
What you may not know is that I actually have another major connection to CF. I grew up with my younger cousin Shannon who also has CF. I grew up seeing her do her treatments (which consisted of twice daily nebulizer treatments and a variety of vests over the years that shook her to break up mucus in her lungs). Shannon (with the help of my aunt and uncle) tried to keep CF from slowing her down, she was/is always fun to be around. Growing up we would do sailing trips together, camping trip (singular ha ha), met up in Barcelona Spain, family trip to Mexico, etc. All the while Shannon had to plan how to bring her treatments and medicines. How to make time to do her treatments, sanitize all her equipment, and make thousands of judgement calls on what was safe for her or not. What I didn’t know was this experience was helping prepare me for being a parent of a CFer. I am so grateful to have Shannon and my Aunt and Uncle to consult with as we now start making those thousands of judgement calls for Rowland.
When Shannon was born the median life expectancy was around 30 years old. Thanks to the investments of the CF foundation Shannon had improved treatments introduced for her as she grew. These all helped her stay healthy enough to keep her lungs and be available for the long-awaited CFTR modulator, Trikafta, that the CF foundation released in partnership with Vertex in 2019. This has drastically changed Shannon’s life and blew the roof off her life expectancy. Selfishly it has given me a cousin I can ask all my “scary” CF questions to when helping Rowland cope with his CF for a long time to come.
The continued investments of the CF foundation have expanded genetic variants available for Trikafta, and have helped release the latest modulator Alyftrek. Now Rowland’s variants are eligible for both, and we are currently on a drug trial for Alyftrek for ages 2-6 (currently it is only FDA approved for 6+). When Rowland first started the modulator Trikafta (which he also started prior to its approval due to our awesome CF care team) at about 2 and a half years old, we went from daily vomiting and a constant struggle with weight to almost no vomiting and moving up on his growth curve. The doctors expect Rowland to have a normal life expectancy as these drugs continue to improve throughout his life.
Cambrey has teamed up with the CF foundation on advocating for changes to new born screening (which they are continuing to invest in), so that others will not be missed.
The CF Foundation has changed my life and so many others. There are still some though that have no options, no lifesaving modulator to look forward to. We fight for those! Those with CF parents who would die to provide an opportunity at life for their kids. I can’t stop, just because those I love have great medications available to them. There are cousins, parents, grandparents who have been out there fighting to cure CF for much longer than I and still have no life saving drug for their loved ones. Please join me as I do this 15 mile hike to try and make CF stand for CURE FOUND!
A little CF Background
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.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
What you may not know is that I actually have another major connection to CF. I grew up with my younger cousin Shannon who also has CF. I grew up seeing her do her treatments (which consisted of twice daily nebulizer treatments and a variety of vests over the years that shook her to break up mucus in her lungs). Shannon (with the help of my aunt and uncle) tried to keep CF from slowing her down, she was/is always fun to be around. Growing up we would do sailing trips together, camping trip (singular ha ha), met up in Barcelona Spain, family trip to Mexico, etc. All the while Shannon had to plan how to bring her treatments and medicines. How to make time to do her treatments, sanitize all her equipment, and make thousands of judgement calls on what was safe for her or not. What I didn’t know was this experience was helping prepare me for being a parent of a CFer. I am so grateful to have Shannon and my Aunt and Uncle to consult with as we now start making those thousands of judgement calls for Rowland.
When Shannon was born the median life expectancy was around 30 years old. Thanks to the investments of the CF foundation Shannon had improved treatments introduced for her as she grew. These all helped her stay healthy enough to keep her lungs and be available for the long-awaited CFTR modulator, Trikafta, that the CF foundation released in partnership with Vertex in 2019. This has drastically changed Shannon’s life and blew the roof off her life expectancy. Selfishly it has given me a cousin I can ask all my “scary” CF questions to when helping Rowland cope with his CF for a long time to come.
The continued investments of the CF foundation have expanded genetic variants available for Trikafta, and have helped release the latest modulator Alyftrek. Now Rowland’s variants are eligible for both, and we are currently on a drug trial for Alyftrek for ages 2-6 (currently it is only FDA approved for 6+). When Rowland first started the modulator Trikafta (which he also started prior to its approval due to our awesome CF care team) at about 2 and a half years old, we went from daily vomiting and a constant struggle with weight to almost no vomiting and moving up on his growth curve. The doctors expect Rowland to have a normal life expectancy as these drugs continue to improve throughout his life.
Cambrey has teamed up with the CF foundation on advocating for changes to new born screening (which they are continuing to invest in), so that others will not be missed.
The CF Foundation has changed my life and so many others. There are still some though that have no options, no lifesaving modulator to look forward to. We fight for those! Those with CF parents who would die to provide an opportunity at life for their kids. I can’t stop, just because those I love have great medications available to them. There are cousins, parents, grandparents who have been out there fighting to cure CF for much longer than I and still have no life saving drug for their loved ones. Please join me as I do this 15 mile hike to try and make CF stand for CURE FOUND!
A little CF Background
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.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
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