Well, what a year we had! Sadly, we had to cancel our annual golf scramble fundraiser but we are back on for this year! Mabel is now 4 years old and continues to be a happy, social, strong-willed girl! She loves going to preschool and telling us all about what she's learning (Did you know that the groundhog lives in a BURROW?!") She loves dancing to music, creating arts and crafts projects and practicing her scooter skills in the kitchen!
Hopefully some of you were able to make the Team Mabel outdoor movie night in Spring Lake this past fall. We got to watch Moana! Mabel even got dressed up as Moana and inspired a dance party in front of the big movie screen with the other kids. Mabel raised over $1,000!!
Thankfully, Mabel has been extremely healthy throughout the pandemic. Wearing a mask came easy to her and she has only had a few minor colds. She has been on Orkambi for two years now and we are so grateful for how it is contributing to her health.
We are also very excited to announce that the FDA has approved the newly developed drug called Trikafta to be reviewed for use in children 6-11 years old in June! If approved for this expanded use, an additional 1,500 children with CF will be able to treat the underlying cause of the disease earlier in life.
We've very optimistic that Mabel will be able to be on the "miracle drug" when she is in kindergarten!
The walk this year will again be virtual buit that doesn't mean you can't get out, walk, and help us fundraise for CFF and Mabel Jane!
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.