As we begin to break out of our long, long hibernation, thanks to COVID 19, we just can’t resist asking for money and support for the Cystic Fibrosis Foundation, Buster’s Buddies and all of those people who fight cystic fibrosis on a daily basis. Just kidding about the money . . . but not really.
Our grandson, Buster, is almost nine years old, and to most people he looks like a typical 8 year old. Under that brave and optimistic exterior, is the heart, mind and soul of a warrior - under attack 24 hours a day, 7 days a week. Buster takes about 50 medications each day, and spends an hour or more connected to an oscillating vest and nebulizer, to help clear his airways. Buster is now getting the benefits of the third generation of “miracle drugs” - the modulators which 65 years of CFF research and work have developed. Clinical trials are underway which could introduce him to the fourth generation of modulators as early as this summer. Trikafta has proven to be a real game changer in the treatment of cystic fibrosis in adults and teenagers.
Buster is already experiencing some of the signs of damage from cystic fibrosis, so the sooner he can get on that treatment, the better. Buster is one of the lucky ones, for whom these modulators may be effective. But, about 10% of people with cystic fibrosis have genetic defects that do not allow these treatments to work - CFF will continue to fight and work to find treatments and a cure for every person with every one of the over 2,000 mutations of that single gene which cause over 1,800 identified forms of cystic fibrosis.
In addition to CFF’s funding of research and development of more effective treatments, the search for the cure continues. That cure will undoubtedly be genetic, and work on CRISPR and other newer and more effective gene editing tools make a cure more than possible in the next 10 to 15 years. But all of that costs lots of money.
For the last few years, spring has always meant that we are preparing for the Great Strides Walk to support the Cystic Fibrosis Foundation at Heather Farm Park. Due to COVID 19, the 2020 and 2021 "live" Walks were replaced by "virtual" walks. Thanks to our great friends, family and supporters, Buster’s Buddies raised nearly $30,000.00 through those virtual Walks.
Buster’s Buddies has been blessed and honored to have your support in the past, and look forward to seeing you in person this year on April 30. If you cannot Walk on April 30, you can always donate to support another walker who has registered.
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.