To Our Kick-Butt Community of People:
Hello, All. It's Great Strides time already. How is everyone doing? Hanging in there during isolation I hope.
I HAVE HUGE NEWS: Two weeks ago I began taking the newest CF medication, a genetic modulator, called Trikafta!!!!!! For the last 5 years I have been unable to take this class of medication because of a drug interaction. Needless to say, I have been eagerly anticipating the arrival of a genetic modulator that I would able to take. I've already, which is wild, noticed several small changes that add up to a very big deal: better sleep; can walk for longer; able to chase Hattie for longer periods; much lower heart rate (@rest & with activity); significantly less dry mouth/skin etc.; massively thinner secretions that come up with ease; my voice has changed (so crazy); almost zero coughing, even while doing treatments; improved sleep; taking less enzymes; and, this after only 2 weeks! I'm hopeful, yet cautiously so, that I will continue to see improvements. I cannot believe how lucky I am. This doesn't seem real sometimes.
This year the Cystic Fibrosis Foundation is celebrating 65 years of service to our community! The CFF is doing a nationwide virtual walk event, Together: Celebrating 65 Years, from 2:00-3:00 PM PST this Friday June 5th (6-5), to commemorate the milestone. Everyone who is interested is welcome to join. To register, visit https://community.cff.org/vlc/live/38/page/218.
Please consider 'Coughing It Up" (donation, for those of you lacking in the sarcasm department, lol) to Great Strides 2020. Let's make fundraising history for this years' 65th year of the CFF. It seems only fitting for such an unprecedented time in my life & the life of so many others living with cystic fibrosis.
My Future is Bright,