As we began to write our letter to you this year the first word that came to mind was…thankful. When we first asked for your support 19 years ago in our fight against Cystic Fibrosis, Wells was 6 months old and we truly didn’t know what his future held. What we did know, is that we would do anything possible to ensure he would live a long and healthy life. Thanks to the support of so many of you and the astounding progress being made in research, Wells’ future looks incredibly bright. The feeling of immense joy we have in being able to send Wells off to college this fall is indescribable. This was never a guarantee.
It’s difficult to send any child to college, much less one with a life-threatening disease. We have had to be concerned about nearby CF hospital centers; how will Wells continue to manage his treatments; how will he be able to sterilize his medical equipment in a dirty dorm room; academic accommodations; housing accommodations; handling missing classes because of CF complications and many other issues. Because of these possible issues, Wells’ college experience will look somewhat different than others. While trying to be a normal college freshman, he must still adhere to his strict medical regimen: over 40 pills a day; 9 inhaled breathing treatments a day; over an hour each day hooked up to a vibrating machine clearing the mucus from his lungs.
Since 2012, three life-changing drugs have been approved to treat the basic defect of Cystic Fibrosis. Wells has been fortunate enough to have been on two of these drugs. He is currently on Symdeko which has provided less side effects and continued improvement of his health and quality of life. Thanks to these new drugs, Wells has been hospitalized only once in the last 4 years remaining free of serious lung infections. However, the best is yet to come as we eagerly await FDA approval of the “triple combo” drug which could be as early as 2020!
Although our progress has been amazing, here’s a quick dose of reality as to why it is still critical for us to continue to raise funds for Wells’ future. It has taken $3 billion and 25 years to get to where we are now. Our goal of a CURE is ambitious. Projections show we will need $9 billion more to cross the “cure for all” finish line. Wells yearns to live his life like a normal young adult. Wells wants a cure.
This year celebrates our 19th year as Warriors for Wells! You can help us continue to fight for the Cure by joining our Great Strides Campaign! We will be walking for a Cure for Cystic Fibrosis on Saturday, April 27th at Shaffner Park and we hope you will join our fight. A generous donation to the CF Foundation in honor of Wells: $50, $100, or $1,000 – whatever amount you feel comfortable with – would be greatly appreciated. You can register to walk with us or make a donation online by clicking the yellow buttons on the left side of this page. Together, with your help, we have raised over $1,500,000 for the CF Foundation since Wells’ diagnosis in 2000.
Our family is extremely grateful to each of you for your continued support of Warriors for Wells! While real progress has been made, our work is not yet done. The lives of people with Cystic Fibrosis are still being cut far too short every day. Without you, our fight against Cystic Fibrosis would not be possible.
Fighting for the Cure, Kelli, Perry, Stuart, Chase and Wells
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.