It is hard to believe that Buster’s Buddies is walking in our seventh Great Strides season this year. This year, we will walk on Buster’s 7th birthday – May 3, 2020 at Moonlight Beach in Encinitas.
Over the past seven years, you (Buster’s Buddies) have helped to fund development of 3 incredible new CFTR modulators. These drugs work to improve the actual defect in the gene that causes CF. These modulators have built upon each other, and we are currently waiting on FDA approval for the 3rd generation modulator– Trikafta – for Buster’s age group. We are hopeful he will be taking Trikafta by the end of the year. This medication is doing wonders for the community- increased scores on PFT’s (pulmonary function tests), increased weight gain, decreased lung infections and decreased liver enzymes- all things that will help Buster immensely. In addition, trials are currently underway to look at the daily treatment regimen for those with CF on Trikafta. Is 1-2 hours of airway clearance truly necessary anymore? Do all meds need to be nebulized daily? These are exciting questions that will change the daily life of those battling CF. Less time required for treatments means more time for LIVING!
However, it is important to know that these drugs are a control, not a cure. In addition, they are not available to all patients with CF and may have unknown side effects. We are so thankful Buster is eligible for these modulators, but it does not mean our work is done. We will not stop until CF means “Cure Found” for everyone.
Over seven years ago, when we received Buster’s diagnosis, I was pregnant and scared of what our future held. I wrote to many of you, saying, “We know we have a long road ahead. Buster is already teaching us that the biggest joys in life come from the biggest risks. He has reminded us about what is really important… He has taught us how to be stronger than we ever knew possible. We are blessed to be surrounded by family and friends like you who are feeding us strength during this difficult time.” The same is true today. Your support continues to feed us strength and hope during the hardest times. I came across a bible verse that has been weighing on my heart for some time – “Out of difficulties grow miracles (1 Peter 5:10).” Hope is what pushes all of us through the hardest times. With hope we can fight any battle. Thank you for fueling that hope year after year.
As many of you have heard, our miracle baby girl will be joining us in August. Although she won’t be fighting as a CF warrior with Buster, she will always be fighting alongside him as his number one cheerleader. Buster has patiently waited year after year praying and hoping for a baby sibling. When all hope seemed lost, we decided to get him a dog! Two weeks later, 2 little pink lines reminded us to never lose hope. Every year we walk as a group and we are all reminded to never lose hope. Miracles are possible and due to the support from people like you, Buster’s Buddies has raised over $385,000 that has helped to create these “miracle” modulators. And the true miracle, a cure for Cystic Fibrosis, is on the horizon!
We cannot think of a better way to celebrate Buster’s 7thbirthday on May 3, 2020 that with all of you, on a beautiful beach, celebrating the hope that continues to thrive year after year. We plan to celebrate Buster right after the walk. Your gift is your presence and support. The hope of more birthdays for Buster is the best gift you can give.
Please join us in Encinitas on May 3, 2020 at Moonlight Beach!
See you soon and THANK YOU for your support!
Michael, Laurel, Buster & Baby Douglas