Well the year 2020 has certainly made its entrance! Although this year has already had its many challenges, I hope you all have stayed healthy and found ways to enjoy yourselves! I cannot believe how quickly time has passed. The last year has been one of significant change, growth and success. As some of you know, we made a major move up to Rocklin, a suburb outside of Sacramento, CA. Moving so far away from our family and friends was not an easy decision, but we both saw great potential for our family in this growing city. We have met some great friends and have very much enjoyed a slower pace of life in the “burbs”. We have enjoyed daily bike rides and cannot wait to get back to having many play dates, playing at the numerous parks and weekend cook outs with the neighbors. During these frustrating and hard times, we are reminded daily of our many blessings and cannot wait to get back to a new normal.
In the fall of last year, I started a new ground-breaking CF medication called Trikafta (insert sounds of angels here!). This medication is a triple combination therapy made available to CF patients in October 2019 and it has significantly improved our quality of life - SIGNIFICANTLY. As I’m writing this I can’t even remember the last time I coughed or had a headache! I have so much more energy during the day, am able to work out without stopping, and can honestly see a very long and bright future. This was the breakthrough we have all spent our time and money praying for. This is the drug that gives people effected by CF so much more hope. I cannot thank you all enough for going through this CF journey with me, offering your prayers and encouragement along the way. We are truly blessed.
My most recent appointment in March showed the improvement in lung function that I feel on a daily basis. At my recent appointment my lung function has already increased with my small airways showing the most improvement. We were able to drop my treatments down thus giving me more time to enjoy life with my family – something I have desperately wanted. Troye and Kaydence give me so much joy and now I can be less distracted by the ailments of this disease.
Every spring I participate in the Cystic Fibrosis Foundation’s Great Strides fundraiser which helps to raise awareness and fund research to find a cure for CF. This year the foundation is doing a virtual walk on June 5th. Although new medications have dramatically increased the quality of life for everyone effected by CF, the goal will always be to ultimately find a cure. If you would like to be a part of Great Strides this year please use this link to donate to my team. As always, I truly appreciate all of you and am excited I am able to share my story with you all on a yearly basis.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to 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 not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, 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. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.