JoeStriders

The annual Great Strides walk to cure Cystic Fibrosis (CF) is fast approaching - June 1st, 10:00am at the Navy-Marine Corp Stadium, Annapolis, MD.  We are so excited to be there this year raising awareness and funds to help those with CF live long, healthy lives.

As many of you know Joey has now been on the life-changing medicine, Trikafta, for close to 3 years now.  We continue to see the benefits of this medication including less exacerbations, less illnesses, and less need for antibiotics.  So this means more time to enjoy being an almost 15 year old teenager weeks away from finishing his first year of highschool -what?!?! It has truly been a great year for him in part because of so many of you. He started off working most of last summer getting ready for football season.  While he had only played flag previously, he worked hard to learn the game and make the team.  He then went right into a winter scrub basketball season with his bro, JP on his team to have a blast and show off some of his B-ball skills.  Joey, then, finished the year helping his SPHS JV lax team win the county championship by a landslide. Watching his athletic success is nothing short of a miracle and it would not be possible without his daily consistent, hard work and dedication to his sport and health.

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 and respiratory therapy.  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.

This isn’t easy to do, especially as a busy highschooler) but he does it mostly with a smile. Know that it is all of you that help make these treatments possible.

As you know from prior years, the funds raised by the CF Foundation through Great Strides go to the development of these medicines he takes.  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. And 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.

Please consider helping us:

1. Join us for the walk on June 1st at Navy-Marine Corps Studium at 10:00am.  Register at:  http://fightcf.cff.org/goto/JoeStriders
2. 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.
3. 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.
4. 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
5. Last but most importantly please 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, Fred, Jack, JP and Joey