Dear Family and Friends,
As most of you know my husband Ryan has cystic fibrosis. We are so grateful that Ryan continues to be healthy, but many with CF are not. The last several years have been tough for nonprofits but especially for the CF Foundation because they have just been able to start hosting in person events due to the pandemic and the high risk for CF patients.
But the research couldn't and didn't stop! Funding is needed now to keep that research going. While I can't find the cure myself, I can fundraise to help the scientists that CAN find the cure.
CF in not an easy disease, it has no remission. By the age of 16 Ryan was struggling to breathe and lead a normal life. His mornings and evenings were spent doing treatments and his vacations were spent going into the hospital for IV treatments. Then at the age of 20 Ryan was on oxygen full time and had to take a semester off of school for his double lung transplant. The reason Ryan lived long enough to have is transplant is the advancement in medicines made by the CF Foundation. While his transplant is what has saved Ryan's life, it isn't a cure!
The CF Foundation has made so much progress with reserach in the last couple of years. They funded the research for Trikafta which has been regarded as a miracle drug helping over 90% of the CF population increase their lung function and reduce hospitalizations. Unfortunatley, the other 10% of patients, including Ryan, are still waiting for their miracle therapy. There are some exciting things in trial for his mutations but to keep the trials going they need more funding.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, husbands, wives, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. I walk for Ryan and for the other 29,999 patients and hope you will support me in my efforts.
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, husbands, wives, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. I walk for Ryan and for the other 29,999 patients and hope you will support me in my efforts.
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today!
Thank you in advance for your support!
Love,
Sue
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.