As most of you know our daughter, Bethany Tullis, has Cystic Fibrosis (CF) thus our family has a deep desire and goal to raise awareness, raise money and raise support for researchers as they work to find better therapies and ultimately a cure for this chronic and progressive disease. The Cystic Fibrosis Foundation (CFF) tirelessly pursues efforts to cure Cystic Fibrosis through a model of efficiency, innovation and a results-driven approach.
Thanks to the support and donations by many of you and others engaged in this battle, “Great Strides” have been made towards our goal of better treatments and a cure. 2018 was a strong year for the CF community with new drugs and treatment therapies that look very promising and there are great expectations for late 2019 that should be game changing as well. Just a few years ago, the median age of survival for CF patients was 37 years of age. Now it is just over 40. This is encouraging news and is testimony that progress is being made but we can’t slow down – we must keep moving this number higher!
The good and the bad thing about many patients with CF is that some don’t show signs of having a “chronic” disease. When in a crowd or group of people, sometimes it’s very difficult to tell who has CF and who doesn’t but it doesn’t change the fact…it’s there and, they do. Bethany is one of these CF patients.
In honor of Bethany and others who have CF, we are asking for your help by donating to the CFF in the upcoming Great Strides Walk. The Great Strides Walk will be held this year in Wichita at Exploration Place on Saturday May 4th with a check-in time of 9:00AM. We would love to have you join us! If you plan on walking with us, please arrive no later than 9:00 to join us in our “Team Bethany” photo. Let us know if you are walking and we’ll keep an eye out for you and remember to wear your Team Bethany shirt from last year. If you don't have one, I'll have some with me at the walk for $15 with 100% going to the CFF. If you can't make it to the walk you can donate online or write a check to the Cystic Fibrosis Foundation and get it to me or mail it to: Team Bethany C/O Dean Griffis 240 S Forestview Court, Wichita, KS 67235
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.