Dear Family & Friends, April 2020
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 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 normal "soup" of bacteria or fungus. This 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, as a matter of fact her tremors continued to worsen to the point of full body tremors by the end of the year and daily rescue medicines for the 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 very hard 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 4 times a month. The bad news is she is losing lung function, down from 121% to 106% in just 2 months and she 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 cause of the tremors and severe migraines, but at the first sign of any increase in tremors or migraine her neurologist will remove the trikafta permanently. This is scary and we know it was trikafta causing these horrible side effects but it must be proven to be taken seriously. 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 and that is the ultimate goal of the CF Foundation and these fund raisers.
I hope you will once again consider helping us raise money for a cure to cystic fibrosis.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them and hope you will support us in our efforts.
Real progress has been 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? Support me by making a donation 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:
Walk DetailsMailing Address for donations
Date: 5/15/2021 Make checks payable to: CFF or CF Foundation
(Note in MEMO line: KAREN ELIZABETH'S TEAM)
Walk: 10:00am VIRTUAL
Chapter: Colorado - Denver Mail to: Tammi Barnes
8457 Dover Ct.
Arvada, CO 80005
Event Location: VIRTUAL WALK THIS YEAR
Please support Karen this year with your generous donations! We want to try to have monies collected ASAP, so please make your donation today!
We do understand that donations this year could be much smaller depending on your working situation with COVID being factored in, but just know, any amount you can give is very much appreciated. 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 gift is 100-percent tax deductible.
Bret, Tammi, Cyndel, Amanda, Dana & Karen