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.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.