Hello! We are happy to be writing to you for the 29th year of JAYWALKER fundraising for the Great Strides walk for cystic fibrosis. How thankful we are to be able to send another update to all of you who generously support us year after year!
Unfortunately, we are on the tail end of a rough few months with my health. A round of IV antibiotics due to CF exacerbation followed closely by two bouts with influenza made for a difficult winter. Though my lungs have not yet fully recovered, we seem to be on the upswing.
We are VERY excited about an upcoming clinical trial in which I have the opportunity to take a new drug that shows huge potential in improving the everyday symptoms of the disease as well as halting the progression of CF. The drug works to correct the basic defect of CF, faulty sodium chloride channels in the cell, so the success of the drug would mean incredible, systemic change. We are hoping the drug will be available for everyone with my mutation in 2019. This is only possible due to the hard work of fundraisers and generosity of donors over the past 30 years.
When I think about the history of CF and where we are now, I can barely believe it. I think about my diagnosis at age two and what my family must have experienced. The diganosis of CF in 1987 was devastating. Children with CF rarely lived to be adults and if they did, their quality of life was poor. In the face of that tragedy, my family got to work. They chose to be proactive and started raising money for research with the faintest hope that it would pay off one day. Year after year, they poured themselves into this process and to date, the JAYWALKERS have raised $750,000 for CF. THREE QUARTERS OF A MILLION DOLLARS!!!!!!!!!!!! This money did not come from giant corporate donations but from people that cared giving $20, $50, $100 or more every single year. All these caring, generous donations have not only saved my life thus far but have fueled research for this drug in trial that could stop the progression of CF. It is beyond incredible.
To be honest, we are tired of fundraising. We are tired of asking for money year after year. But, as my family did 30 years ago, we cling to hope that this work will not be in vain. We trust that we are part of history in finding a cure for CF for my mutation and for all those in the CF community. And because the fight is not over, we continue.
THANK YOU from the bottom of our hearts for showing up for us each year with your caring support. Click the link above to make your 100% tax deductible donation.
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.