Well, we’re at it again. Looking for money. By now, you know our grandson, Buster (Benson Robert Douglas). If you haven't met him, please take a couple of minutes and check out this short video our daughter made about him last year - https://www.youtube.com/watch?v=8eGWw52giHw&t=0s
Buster is almost six years old. He's perfect, but despite that perfection, he has Cystic Fibrosis, a terrible and terminal genetic disease. That means he cannot digest his food like you and us. Any infection is very serious for him, because his lungs and other organs fill up with a thick, sticky mucus that will eventually prevent them from working altogether. He takes several medications (about 40 pills each day), breathing treatments (twice each day) and chest compression therapy (twenty minutes twice each day). Every day. He will for the rest of his life. If he gets sick, all of those numbers will rise exponentially.
Great things are happening in the CF research world, since the gene that causes CF was identified in 1989. When we were young, kids with CF did not live long enough to begin elementary school. People with CF now live to an average of 37 years. Doctors say that Buster's life expectancy could be 57 years. There is genetic therapy being developed, and there are wonder drugs out there, and more in development, largely due to the work of the Cystic Fibrosis Foundation. The drugs relieve symptoms but are not a cure. But, there are no wonder drugs yet for Buster. And the wonder drugs that are being used and in development are incredibly expensive ($200,000.00 to $300,000.00 per year per patient - for the rest of their lives). Buster now takes one of those drugs - Orkambi.
That's where we come in, and hopefully you too. Once a year, we walk in support of Buster. We walk in support of the Cystic Fibrosis Foundation, which funds and supports the development of those drugs and treatments. And we walk to give hope to tens of thousands of children and adults who live every day with this disease. To give them more tomorrows. We all want more tomorrows, don't we? You can help give Buster, and thousands of people with CF, more tomorrows, by donating, walking, encouraging and supporting.
Buster’s Buddies will be walking again at Heather Farm Park, in Walnut Creek, on Saturday, April 27. Registration at 9:00 a.m. and walk at 10:00 a.m. We’ll be done before Noon.
Since 2013, before Buster was born, about 250 family and friends have joined us to walk in Walnut Creek, Moonlight Beach and Merced, as Buster's Buddies. We have raised over $340,000.00 for the Cystic Fibrosis Foundation. While we are humbled and greatly appreciative of that support, we have to wonder - what can we do in 2019? We hope that you will join us to find out together.
Thanks for your support for Buster and all of those who suffer from this terrible disease.
G-Daddy, also known as Grandpa (formerly known as Dennis) and Grandma (formerly known as Suzanne)
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.