Thank you so much to all of you that have reached out about when to donate to the Cystic Fibrosis Foundation this year! Your support towards a cure for Buster and all of those fighting CF means the world to us. Buster has actually been asking about when we will have his “Buster’s Buddies walk” again. Now he has brought up a new and valid point, saying, “Sister needs to see Buster’s Buddies!” We realized he is right and decided to get creative!
Although the CFF was unable to hold their annual Great Strides event in-person this year, they have invited teams to participate virtually across the nation. On SATURDAY, JUNE 5th, we will walk for Buster! Although we may not be gathered together, we challenge you to get outside and walk for Buster as well (and all of those fighting Cystic Fibrosis daily). Buster spends at least an hour a day completing nebulized breathing treatments and chest physiotherapy to keep his lungs as clear and healthy as possible. We challenge YOU to take some of your day on June 5th to walk in Buster’s honor. Maybe explore somewhere new and take a moment of gratitude for your health and ability to do so.
The month of May is both Cystic Fibrosis Awareness month and Mental Health Awareness month. We cannot think of a better way to support these challenges than to combine exercise, gratitude and community. Please register and/or donate to our Buster’s Buddies virtual team here!
In addition, the Cystic Fibrosis Foundation is anticipating the FDA approval of a game-changing treatment for Buster on Tuesday, June 8th. This third generation modulator is the product of your support of the Cystic Fibrosis Foundation! Trikafta has been approved for ages 12 and older and has made some INCREDIBLE improvements for many of these patients. However, Trikafta is not a cure, it is not for all CF mutations and it can come with debilitating mental health side effects for some patients. Buster has been busy getting baseline testing handled (lab work, eye exams, etc.) so he can get on Trikafta as soon as insurance allows. Our hope is to kick off the week of this anticipated approval with prayers and good vibes from our entire Buster’s Buddies community!
Please share your photos from June 5th with the hashtag #bustersbuddies so that Buster and Gracie can see the support from near and far! We will be hiking Green Valley Falls in Cuyamaca Rancho State Park! Where will your adventure take you? We cannot begin to express what your support means to all of us. Thank you for being the army that lifts us on the hard days. We look forward to putting our toes in the sand with you in 2022!
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.