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Join Marie in fighting Cystic Fibrosis this holiday giving season!

Michele Taigounov

Michele Taigounov

Dearest Friends and Family,

It has been a life-changing year for both the Cystic Fibrosis community and our family!

In October, the CF Foundation and community celebrated FDA approval of Trikafta for ages 12 and up. Young adults who have started the drug, like Gunnar Esiason, are suddenly planning for college, grad school, and even envisioning retirement. These are futures they didn't think they had, but now seem possible thanks to the health improvements they are realizing on Trikafta. It is the most effective drug covering the largest number of patients to date, but it is not a cure. We are hopeful it will be approved for Marie's age group with continued efforts by the CF Foundation and their partners.

On the personal front, Marie is in good health, but the year was not without its challenges. In order to keep Marie healthy against this life-shortening disease, we do 2-3 daily nebulizer treatments, each with 3-4 inhaled medicines, and at least 4 oral medications with around 20 daily doses. We have quarterly check ups three hours long with 5 different medical professionals, bloodwork, x-rays, multiple tests and evaluations. It is a lot to ask of a four year old to comply, and our strong-willed Marie rebelled against treatments this year. Her reluctance to comply with her care routine made the burden of balancing Cystic Fibrosis with the rest of our life harder than ever. This lead to a big life decision to leave my ten-year corporate career and shift all of my focus to Marie and her care.

We reflect on the year's changes and achievements with gratitude, but the fight to cure CF is far from over. As we enter the Holiday season of giving and family, please consider donating to this incredible cause so close to our hearts!

With love and holiday cheer,
Michele, Ruslan and Marie

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