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Chris and Lauryn Tubesing’s story: Discovering a gene therapy for cystic fibrosis

The missing element is diligence

Video

Chris and Lauryn met at the Air Force Academy and quickly fell in love. A year after they got married, they welcomed their first child, quickly followed by two more. But after their daughter A.J. was born, she tested positive for cystic fibrosis, a devastating diagnosis that changed their lives.

Later, their youngest daughter was also diagnosed with cystic fibrosis, and they learned that their daughters’ life expectancy was just 31 years. Their daily treatment routine included taking numerous pills and wearing a special vest that "shakes the snot" out of them to clear their lungs.

Amid the family’s fears of a life of relentless treatments, Lauryn discovered a promising new drug that addressed the root cause of cystic fibrosis, not just its symptoms. After diligently advocating for their daughters' specific mutation, they secured approval to take the gene therapy.

Since starting the treatment, which was developed and manufactured in partnership with Thermo Fisher Scientific, everything has changed. Now, their daughters' life expectancy has doubled to the 60s, and Chris and Lauryn can look forward to a brighter, longer future for their children.