The annual Great Strides walk to cure Cystic Fibrosis (CF) is fast approaching. We are trying to raise awareness and funds to help those with CF live long, healthy lives.
As for Joey, he has now been on the life-changing medicine, Trikafta, for close to 2 years. We continue to see the benefits of this medication including less exacerbations, less illnesses, and less need for antibiotics. This means more time to enjoy being a teenage boy. He is able to excel at a lot of sports, do well in school, and is preparing for high-school in the fall. 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 years, the funds raised by the CF Foundation through Great Strides go to the 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 won’t 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 (using a stationary or portable vest, as seen in the picture - thanks to the Lea Marie Farone Foundation) along with many other breathing equipment and strengthening exercises. He takes numerous medicines daily morning and night along with and before each meal. He needs to do more therapy sessions and take more medications with any illness.
Thankfully, he has had a good year with few pulmonary exacerbations. We know that compliance with 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:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.