Welcome to my Page
Since 2018 I have been Lucky enough to be on some form of Cystic Fibrosis (CF) modulator. Prior to Trikafta being FDA approved I was on VX659. VX659 was in trials alongside trikafta, In my own opinion they both worked amazingly. But only one was able to be fully pushed through to open market availability. The dream is to one day have a cure for CF, but a more realistic goal in the meantime is to have options for modulators for all the different types of Cystic Fibrosis Mutations. I am lucky enough to have two copies of the most common One; Delta F508 or F508 Delta. But there are thousands of different mutations out there and many people are waiting for their own kind of Trikafta.
The itilized paragraph below is actually what I wrote for last year, 2021 December, and funny enough or maybe not so funny, I was sick for all Decmeber 20222 this year and into January again. Alhough it started out as just a CF exacerbation I did end up getting covid right after Christmas which didn't help my Asthma or CF or the fact that I was already sick. But luckily with all the medications I was on I was able to prevail again and get back to better health.
But being sick is still a very real thing with CF depsite these amazing meds that have been brought to market. So More research needs to be done. I often think I did better on the medications that weren't pushed through to FDA approval, but the overall CF population that was a part of the trial I guess didn't. That is the tricky thing with CF, Cystic Fibrosis is considered a rare lung diease being around ~70,000 people, but our own conditions can vary greatly making it difficult to find meds that work across the board for the population as a whole, since there are thosands of different mutations.
"Despite the amazing medications we can still get sick with CF issues. In December I was on IVS for the majority of the month, the longest I have ever been on IVs without a break. I was constantly checking if I had covid or any other virus, all of them kept coming back as nothing. In the end it was really just a CF exacerbation. I was able to do it all from home without any hospital stays which I would greatly say is thanks to Trikafta and of course my support of family and friends."
This year I will be biking the 30 Miles again this year and I hope you are able to donate what ever you are able to or if you have a bike and want to join us, please do me a favor and sign up for the Maddie Mockingbird Team. I am going to see about making some Bike Jerseys so we can show Stratford/Surrounding towns what CF is all about!
This Year the CF Cycle for Life is again biking along side Beers and Bikes and starting from Two Roads Brewery in Stratford. On Saturday May 13, 2023! I hope to see you there!