Hello & welcome to the Jaywalker’s 2021 Great Strides campaign!
We have a wonderful update to share. Your loyal participation over the last 32 years has resulted in a breakthrough treatment that has changed Laura’s life.
As a 36 year old with CF, we were seeing a steady decline in Laura’s health. But, she began participation in a clinical trial in late 2018 for a new modulator that was a combination of 3 drugs, 2 of which were already on the market. Laura saw improvements right away and Trikafta was was approved quickly and released in Oct. 2019 to treat the basic defect of CF in those with a certain gene type.
Needless to say, it was the best news we could have received short of a cure!! Laura’s pulmonary functions improved by 18%, she no longer had the constant, rattling cough and her energy level improved significantly.
Laura, Dave and Ruby have much brighter days ahead! She is looking forward to using her degree and joining the work force by opening her own psychotherapy practice in June. Who would have ever thought? To put it very bluntly, her diagnosis in 1987 was a death sentence. We have you to thank for believing in our cause and for generously contributing over the years.
We stop short of saying we’re done. This is not a cure. CF still takes a toll, just not as significantly as before. AND there are still CF patients with defective genes types that don’t respond to Trikafta. Those families are still waiting. The CF Foundation is working as hard as ever to reach the goals set out in the beginning.
If you would like to join us in wrapping this thing up, you can use the following link to make a 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.
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.