The annual Great Strides walk to cure Cystic Fibrosis (CF) is fast approaching. While we won’t be able to physically walk this year due to Joeys lax tournament (#trueontwo) that wont stop us from trying to raise awareness and funds to help those with CF life long, healthy lives. We know it has been another tough year for a lot of folks, and we are just so grateful for any help you can give.
As for Joey, he was able to start Trikafta around his 12th birthday! Within the first few days of starting it he noticed that he was able to breath better. What a miracle! During this last year, he has also been involved in a SIMPLIFY clinical trial looking at whether he will be able to decrease his normal daily treatments and ultimately slow the progression of his CF by using Trikafta. While participating in these trials take a lot of time and energy (including having to sit completely still for an hour and half a couple times - not easy for an active preteen!) he is excited to be involved to hopefully help make quality of life of those with CF better.
We are so grateful to all those that made this drug possible including all of you who have supported our fundraisers in the past. As you know from prior year, the funds raised by the CF Foundation through Great Strides go to development of these medicines. While Trikafta is a better medicine to treat the underlying cause of CF for some mutations, it does not address all CF mutations, and it is still not a cure. We wont stop until there is. The science is almost there, we just need the resources to make it possible. Joey works so hard each day to stay healthy fighting CF on the inside, and we promise to work just as hard to fight it from the outside.
Because CF is considered an invisible disease, many of you probably do not know what he does each day to keep his body working properly. CF causes the mucous in your body to be extra thick because of a defect in the salt channel of cells. This mucous can build up, especially in the sinuses and lungs making it easier for infections to set it, damaging his lungs. He starts and ends each day with inhalers, nebulizers, physical therapy (vest, breathing, strengthening exercises), numerous medicines. He needs to do more therapy sessions during the day with any illness.
Thankfully, he has had a good year with fewer pulmonary exacerbations. A lot of this is the result of all the pandemic mitigations, but we know that his compliance to treatments, and his support in the community, school, sports and from YOU that help keep him healthy! He also makes exercise a priority and pushes himself as much as possible each day to keep his airways clear and his lung muscles strong. Anyone that sees him on the field, court or pool knows that. We are going to push ourselves also this year to reach our goal. If you want to help us do so there are lots of ways!
1) Donate 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 incredibly grateful for your help. 2) Consider asking your business to match your donation! This is a great way to increase your donation and companies generally set aside funds annually for charitable donations. We hope this year they will consider making it to the CFF. 3) Forward this email on to anyone you think might be interested in helping us or attach this link to a group email/site: http://fightcf.cff.org/goto/JennyMiller 4) Pray for Joey's continued good health and for a CURE for all those with CF. Together we can make CF stand for Cure Found!
Thank you so much for joining the fight with us. Gratefully, Jenny and Fred
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To help minimize the risk of COVID-19, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Please be advised certain localities and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you are feeling ill or have been recently exposed to COVID-19.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.