As we begin to break out of our year 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 8 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 Walk was cancelled, but supporters were asked to walk “virtually” - on their own. Thanks to our great friends, family and supporters, Buster’s Buddies raised $20,000.00 through that virtual Walk.
This year, once again we cannot hold our Walk in person, and are planning a virtual Walk on Saturday, May 15. That means that if you can support CFF, you would register at the link below to commit to take a walk yourself on May 15, around your neighborhood, open space or trail, in honor of Buster and those with cystic fibrosis, and in support of those who are working so hard to find treatments and someday maybe even a cure, to this terrible disease. Can you take a walk that day, in honor of Buster and others with cystic fibrosis and in support of CFF?
Buster’s Buddies has been blessed and honored to have your support in the past, and look forward to hearing that you will walk, and “seeing” photos or videos of your Walk. If you cannot Walk on May 15, you can always donate to support another walker who has registered.
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.