Hey everyone! Lego My Lungs is back again and we sincerely hope that you can come join us on walk day May 14th at Point State Park as we walk to support cystic fibrosis research. Please only join us in person if you are vaccinated. Otherwise, you can walk from anywhere with us virtually.
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 almost two years 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 37th birthday, continued good health, RJ & Erin's ninth wedding anniversary, and Amelia's seventh 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
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To help minimize the risk of COVID-19, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should 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 only attend outdoor CF Foundation events where they are able to distance and stay within their family group.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by 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.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, 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 well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Please be advised certain localities and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you are feeling ill or have been recently exposed to COVID-19.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.