There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them. Will you join us? All we need you to do to become a member of our team is click on the "Join our Team" button. From there you can make a donation and start your fundraising.
Why we walk...
My name is Lisa Willig and I am writing you because my daughter needs your help. My daughter’s name is Sydney and she is a very active and energetic 17 year old who loves being around people. Today she enjoys water skiing, racing downhill in snow skiing, and playing soccer for Norwin High School and for the Aresenal Soccer Club. She is also preparing to attend Geneva College, where she will continue to play soccer and major in Elementary and Special Education. When Sydney was 2 weeks old she was diagnosed with Cystic Fibrosis (CF). What is CF? Well, we have learned a lot in the last 16 years and we learned even more about CFRD, Cystic Fibrosis Related Diabetes, when Sydney was diagnosed almost 7 years ago.
CF causes Sydney’s body to make thick, sticky mucus, which makes it hard to breathe and it clogs her digestive system. We have learned many things during the last 17 years that allows Sydney to live a “normal” life, that has many 'extras'.
In May 2019 through October 2019, CF stopped Sydney's typical life. During this time, she was in and out of the hospital and from Aug. - Oct. Syd had a picc line and was on IV antibiotics for nearly 10 weeks. Frustration had set in and after all the IV antibiotics, her PFTs continued to drop to her lowest levels ever.
Just as we were feeling defeated, the FDA suprised us with an early approval of Trikafta. This new triple combined medication was the med we were waiting for! With the help of many, Sydney's insurance quickly approved her and she took her first dose on November 16th. Within one week on the med, the cough that she had since March was gone. After nearly 2 months on the med, Syd did her first PFT tests. We had no idea what to expect, but she blew an entire liter more oxygen out of her lungs. Her numbers went from the low 80s to 122. The doctor was stunned and we were so thankful. Though this is not the ultimate cure, this medicine is making a HUGE difference. She is able to run harder than ever and longer than ever.
Even on Trikafta Syd continues with all her other meds. The number of enzymes have increased to seven pills per meal, and in a healthy week, Sydney takes over 300+ pills. Sydney receives breathing treatments and she wears a vibrating vest 2 times everyday to keep her lungs clear (before and after school). She uses her vibrating vest for 420 minutes in a healthy week! Since the CF Diabetes diagnosis, Syd continues to wear a continuous glucose monitor that is constantly checking her sugar, and she gives herself insulin shots 5-6 times per day. The battle with her sugar has multiple bumps in the road. CF Diabetes and the new med, Trikafta is unknown. We have found that Trikafta drops Sydney's blood sugar very quickly and she has learned to treat with less insulin and faster with a drop. Our hope is that over time, Trikafta will help regulate her blood sugar and the quick drops will fade, but only time will tell!
Currently, there is no cure for CF, but with your help, one could be possible in the near future. The drug pipeline for CF is full of hope, but the CF Foundation has to sponsor many of their own drug trials due to the number of people with CF. Many large drug makers opt to work on drugs that have a larger population. (Nearly 1,000 children are diagnosed with CF each year.)
We need your help! No donations are too small. Sydney is not sitting back and depending on donations. Syd has been speaking at CF events to get her message out and her dream for a cure. Sydney does not hide her CF, instead she wants to people to understand her fight, what her life is like, and that she is proud of the battle that she fights daily. Your donation supports Sydney’s drive in finding a cure. Join her mission!
Our first 17 years with Sydney have taught us many new things but also shows us what a great future Sydney has ahead of her. I only hope that you will help in making her future the best that it can be!
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and wellbeing of the CF community, those eligible to be vaccinated are required to be fully vaccinated to join us in-person for the event. If you are not fully vaccinated, we invite you to participate virtually if that option exists.
We do not plan to ask for you to provide proof of vaccination. We are, however, counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID and will abide by this requirement.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, and vendors, have been fully vaccinated.