Hi Friends!
As I get older, I am grateful for my growing community and new friends, I can truly call family.
Whether you would be joining us on the walk or in spirit, I want to thank you from the bottom of my heart for your generous donation and support!
Some of you may be new to my life story. I have cystic fibrosis, an inherited life-threatening genetic disorder that damages the lungs and digestive system. My life expectancy at the age of 1 was 19. Because of modern medicine and therapies, I surpassed that statistic which got pushed to 26 years and now to 37. I am hopeful and more confident that it will only continue to rise and I will get to grow old with my family.
Cystic fibrosis affects the cells that produce mucus, sweat, and digestive juices. It causes these fluids to become thick and sticky. They then plug up tubes, ducts, and passageways and becoming a breading ground for bacteria and infection. To put into perspective, a common cold is much harder on my immune system in comparison to the average person, and it can become life-threatening in some cases.
While there has been an incredible leap in targeted drug therapy. There is still no cure. There is also 10% of the cystic fibrosis population that have rare mutations and do not meet requirements for many of the therapies that are out today (especially Trikafta which I am on that has drastically changed my life). I have lost friends in this fight, so I walk and advocate not only for myself but in the name of theirs.
There is not a day that goes by that I am not grateful for my privilege when it comes to my medication regimen today which includes Trikafta, inhaled treatments, and 45+ pills a day. With the combination of these therapies, I have been able to live life to the fullest extent and as comfortably as it can be despite how CF chooses to present itself on the daily.
The future is still unknown but I am so hopeful knowing that we will continue to fight to improve the quality and length of life for CF patients.
We walk for a cure for ALL people with cystic fibrosis. By joining our team, you can help us end this disease.
Our team is determined to ensure that every person with CF can live a long, healthy life, without the limitations caused by their disease. Thank you for walking hand in hand with me on this journey!
Connect With Us
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.