Spring has arrived and that means JoeStriders are getting ready for our annual Great Strides Walk to cure Cystic Fibrosis (CF). Given this year’s COVID-19 pandemic it is even more imperative that we raise awareness and funds to help those with CF. As the world has shut down, so has much of the progress in treatments, research, and fundraising. We were really hoping Joey could start one of the newer meds in the pipeline, but have learned that the trial for this has been postponed with no idea of its start date. Given the chronic lung involvement of CF, Joey is one of the vulnerable, so we are not sure what his life will look like as the world reopens. His life as many of you know already include lots of social distancing, handwashing, and masks. But now it is even more imperative then ever given COVID-19’s unknowns. While Joey has been preparing for this his whole life, we have always known that each virus/illness that he is exposed to can scar and permanently damage his lungs. CF takes a little of his lungs each day which is why it is a progressive disease. He slows this process by keeping up with his rigorous CF treatment/medicine routine, exercising as much as possible and avoiding organisms that will affect his lungs (viral, bacterial, fungal etc...) Many of these organisms won’t make those without CF sick, but will cause life-threatening sickness in Joey’s lungs. If it is an organism that will make a healthy individual sick it is exponentially more dangerous to Joey.
As many of you know, Great Strides is the Cystic Fibrosis Foundation’s (CFF) largest nationwide fundraiser. Thanks to the incredible generosity of many of you, Team JoeStriders has raised over $30,000 since we have started. The money raised has helped Joey, and all those with CF, immensely through the new medications he is taking and will be taking in the near future. He was able to start a new medicine this year called Symdeko (a newer drug to treat the underlying cause of CF rather than just the symptoms), and there is an even newer one that may become available to him soon, but the pandemic put that trial on hold that would make it available for his age group. This has all been possible because of the support of people like YOU.
Even though CF is considered an invisible disease because you can’t tell someone has it from the outside, it is something Joey fights with daily. CF makes all the mucous in his body to be thicker so he can get sick really easily. He has had a fairly good year with fewer pulmonary exacerbations due to his new medicines, his compliance to treatments, and his support in the community, school and from you that help keep him healthy! He also makes exercise a priority and pushes himself as much as possible to keep his airways clear and his lung muscles strong. He loves all sports, especially swimming, lacrosse and basketball, and we thank his coaches and friends for playing and encouraging him. Even while being so active he still manages to fit in constant daily tasks related to his care--lots of pills, physical therapy, vests, Acapella, TheraPep, Aerobeka, breathing exercises, sinus treatments, nebulizers, and all without ever getting a day off. Though time-consuming, he does these with a smile (most of the time!) We would love to take this condition away from him, but we can’t. What we can do is do everything in our power to find a cure. We would be grateful for any help you can give. Here are four ways to do so:
1) Make a donation on my personal page (http://fightcf.cff.org/goto/JennyMiller) to this cause. Every dollar counts! We get no federal funding and all CF progress has been made through private donations. All the medicines that Joey is taking have been made possible by these donations. We are so very grateful for your help.
2) Forward this email on to anyone you think might be interested in helping us or attach this link to a group email:http://fightcf.cff.org/goto/JennyMiller
3) Sign up to participate in a virtual Great Strides event with us on June 5, 2020 at 5:00pm-6:00pm eastern time.
This virtual event will be a moment for all of us in the CF community to gather and celebrate all we have accomplished. Although we miss the excitement of Great Strides, we can be together to celebrate what we have accomplished thus far and reenergize together as we look to the future. https://community.cff.org/vlc/live/38/page/218
We are going to throw on a JoeStriders t-shirt or any t-shirt representing CF (purple is the national CF awareness color, blue and yellow represents CFF, orange is JoeStriders color but with Joeys recent love of multi-color tie-dye feel free to rock tie-dye also) for a mile walk around the block. Take a minute to think of Joey and all those with cystic fibrosis. Think about the freedom that we all crave after social distancing and think about the freedom from cystic fibrosis we dream about for Joey one day. Send us or post your photos raising awareness for CF!
4) Pray for Joey's continued good health and for a CURE for all those with CF. Let's make CF stand for Cure Found!
Thank you for helping us in any way you can. Gratefully, Jenny, Fred, Jack, JP and Joey
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.