It's almost spring, so 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 ten years old, and to most people he looks like a typical 9 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 one of the lucky ones, for whom these modulators are appearing to 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. Here we are again.
Buster’s Buddies has been blessed and honored to have your support in the past, and look forward to seeing you this year on April 15. We are looking forward to getting supporters out in large numbers this year - like before COVID. If you can't make it on April 15, you can always donate to support another walker who has registered.
Thanks for your continued support for us, Buster, his family and all of the cystic fibrosis patients and caregivers.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.