Hey everyone! Lego My Lungs is back again and we sincerely hope that you can come join us on walk day May 15th as we walk virtually to support cystic fibrosis research.
Our participation in Great Strides is a personal one - RJ is of course a CF patient.He's one of about 30,000 Americans that live with CF.It's important to note that 90% of every dollar raised goes to research - more than any other organization! And - it's working!On July 5, 2015,a combination drug therapy known as Orkambi was approved that directly treats RJ's mutation - Delta F508. RJ began taking Symdeko, another combination therapy, in later 2018 and noticed a lot of improvements. RJ has now been taking Trikafta, approved in 2019, for over a year now and has drastically changed how his health is. His PFTs are off the charts and he has been taken off several other medications by his doctors.
We have many things to celebrate this year - RJ's 36th birthday, continued good health, RJ & Erin's eighth wedding anniversary, and Amelia's sixth birthday! When you walk with us and/or support us, you are giving RJ many more tomorrows and the hope for an even bigger, brighter future!
Last year we raised over $500 - can we do it again?
Lego My Lungs team is proudly sponsored by +Public, a benefit corporation in the State of Pennsylvania owned and operated by RJ Thompson and Kent Kerr
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.