Fighting for a cure for CF for my 4 year old son Jesse
Ben Browne
My Story
Greetings and welcome to my fundraising page for the London Marathon 2024!
Firstly I'm running this marathon for my 4 year old son Jesse because he has cystic fibrosis, and it's my duty to fight for him to get cured.
As many of you are aware, each year I dedicate my fundraising efforts to a charity that holds a special place in mine and my family's heart, providing firsthand support. The Cystic Fibrosis Trust has been instrumental in making life-changing medications accessible. Last year presented challenges for the CF community, and I'd like to share a glimpse of our journey.
A few years ago, when my son Jesse was born, there were no medications for CF sufferers. Over time, drugs like Orkambi and Kaftrio emerged, transforming lives. The CF Trust played a crucial role in advocating for access to these drugs, especially when faced with exorbitant prices. We experienced a rollercoaster last year, with the threat of funding withdrawal for Kaftrio by NICE. Through community efforts and the support of the CF Trust, we successfully navigated this crisis, ensuring continued access to life-saving medication for those in need.
Jesse, now facing a daily routine of numerous medications, nebulizer sessions, and physiotherapy, is set to embark on the Kaftrio journey in February 2024. While we're excited, the uncertainty of the future lingers, emphasizing the ongoing need for the CF Trust's advocacy. Their tireless efforts not only provide support to families coping with cystic fibrosis but also contribute to the fight for a cure.
Jesse's daily life is a testament to his resilience and determination, taking on the challenges of CF without complaint. He's truly an inspiration, and your support is vital in our quest for a cure.
Our fight doesn't end with available medications; we're determined to continue advocating for a cure. With your contributions, whether big or small, and by sharing this page, you help raise awareness and support the CF Trust in their mission. Times may be tough, but every little bit counts.
Thank you for considering a donation or sharing this page with your friends and family. Your support means the world to us as we strive for a future where CF patients, like Jesse, can lead normal lives.
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Target
£2,500
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Raised so far
£3,047
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Number of donors
81
My Story
Greetings and welcome to my fundraising page for the London Marathon 2024!
Firstly I'm running this marathon for my 4 year old son Jesse because he has cystic fibrosis, and it's my duty to fight for him to get cured.
As many of you are aware, each year I dedicate my fundraising efforts to a charity that holds a special place in mine and my family's heart, providing firsthand support. The Cystic Fibrosis Trust has been instrumental in making life-changing medications accessible. Last year presented challenges for the CF community, and I'd like to share a glimpse of our journey.
A few years ago, when my son Jesse was born, there were no medications for CF sufferers. Over time, drugs like Orkambi and Kaftrio emerged, transforming lives. The CF Trust played a crucial role in advocating for access to these drugs, especially when faced with exorbitant prices. We experienced a rollercoaster last year, with the threat of funding withdrawal for Kaftrio by NICE. Through community efforts and the support of the CF Trust, we successfully navigated this crisis, ensuring continued access to life-saving medication for those in need.
Jesse, now facing a daily routine of numerous medications, nebulizer sessions, and physiotherapy, is set to embark on the Kaftrio journey in February 2024. While we're excited, the uncertainty of the future lingers, emphasizing the ongoing need for the CF Trust's advocacy. Their tireless efforts not only provide support to families coping with cystic fibrosis but also contribute to the fight for a cure.
Jesse's daily life is a testament to his resilience and determination, taking on the challenges of CF without complaint. He's truly an inspiration, and your support is vital in our quest for a cure.
Our fight doesn't end with available medications; we're determined to continue advocating for a cure. With your contributions, whether big or small, and by sharing this page, you help raise awareness and support the CF Trust in their mission. Times may be tough, but every little bit counts.
Thank you for considering a donation or sharing this page with your friends and family. Your support means the world to us as we strive for a future where CF patients, like Jesse, can lead normal lives.
