Dear Family & Friends, April 2021 It's that time of year again to support our continued efforts to find a cure for Karen and so many others affected by Cystic Fibrosis. The progress in the research is very exciting, and new drugs are now available to help in treatment of CF and they are that much closer to a cure.
Karen started taking TRIKAFTA on February 2, 2020, with a baseline lung function of 103%FEV1 and random coughing. At the one-month mark on Trikafta, her lung function went up to 118-121%FEV1 and remained there through all of 2020. She had no cough at all and was not growing any of her usual "soup" of bacteria or fungus. This improvement was exciting. Unfortunately, in August, she began having severe migraines and tremors. We decided to play it out, see a neurologist and try some migraine medicines that also help with tremors. There was no improvement at all; her tremors continued to worsen to the point of full-body tremors by the end of the year and daily rescue medicines for migraines. There was also no improvement or relief from daily migraines. In November, her cough began to increase, and she was growing the 'soup' again. In February, we made a tough decision to pull her off Trikafta and see if the tremors and migraines would improve.
I am happy to report that the tremors are almost nonexistent, and now the migraines are less than four times a month. The bad news is she is losing lung function, down from 121% to 106% in just two months, and has a very real CF cough. She will be going back on the trikafta soon so that we can say without a doubt was the trikafta causing the tremors and severe migraines. So, at the first sign of any increase in tremors or migraine, her neurologist will remove the trikafta permanently. We know it was trikafta causing these horrible side effects, but it must be proven to be trikafta. These are not common side effects, and this is why we are willing to put her back on temporarily. There will be a drug down the line that will be a right fit for Karen, just not going to be trikafta or right now. Trikafta is helping so, so many other CF persons, though, and giving them a new lease on life, which is the ultimate goal of the CF Foundation and these fundraisers.
I hope you will once again consider helping us raise money for a cure for cystic fibrosis.
Approximately 30,000 Americans are living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day to breathe. We walk for them and hope you will support us in our efforts. Real progress is being made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By "VIRTUAL" walking May 15, 2021, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Please support Karen by donating to my Great Strides fundraising campaign today!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families. The walk this year:
Virtual Walk Date: 5/15/2021 at 10 am
Make checks payable to: CFF or CF Foundation (Note in MEMO line: KAREN ELIZABETH'S TEAM)
Mail to: Tammi Barnes 8457 Dover Ct. Arvada, CO 80005
Please support Karen this year with your generous donations! We want to try to have monies collected ASAP, so please make your donation today! Any donation amount you can give is very much appreciated. Please help us reach our fundraising goal by donating to our Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your donation is 100-percent tax-deductible. Love, Bret, Tammi, Cyndel, Amanda, Dana & Karen
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.