Eva’s story 2026
Annelle Tanner
Fundraising for Alexandria Great Strides 2026
Annelle Tanner
There is currently no cure for cystic fibrosis and too many people with CF die young or need lung or liver transplants. I am working to help change that reality
Eva turns 16 years old the day before Alexandria’s Great Strides this year! She has been practice driving with her mom – among those Dallas, TX drivers!! Believe it or not, her mom tells her she needs to drive faster. Susan explains, “She needs to go at least 30 mph!!”
Genetic modulators, the best medications currently offered to prevent the devastating impact of CF on lungs and other organs, are not effective for 10% of the CF population. Many of the 90% who qualify for the modulators (including Eva) are discovering side effects incompatible with remaining on the med such as severe anxiety or depression, elevated liver enzymes or stomach pain.
Eva had to change the modulator she was taking last year from twice to once daily due to mental health side effects. Ultimately, she stopped taking that one completely and started a new modulator. She is on a Clinical Trial for the new modulator, helping the scientists fine-tune the long-term effects of this drug; they are closely following her blood markers, especially liver enzymes. She continues to take an injection weekly to correct the complete absence of growth hormone she discovered during testing\last year. Additionally, she takes pancreatic digestive enzymes with any food she eats and multiple vitamins and supplements to help maintain lung, gut, brain, and muscle health.
Martin and I had the unique opportunity to visit the Cystic Fibrosis Foundation Therapeutics Research Lab near Boston, MA, where we met so many bright, young researchers. They are deeply committed to develop medicines that will alleviate the disease burden that all with Cystic Fibrosis experience daily. Our loved ones must take many medicines – any time they eat anything, 2-3 times on a regular schedule, 2-3 inhaled medicines before, during, and after pulmonary percussion treatments. Each section had their goal and, using incredibly sophisticated equipment, shared what they had discovered and what more they were working on. We were in tears at the end of the tour, realizing that each one of these scientists was working diligently so that our Eva – and all with CF, including those who do not yet qualify for the modulators- can live their best life UNTIL IT’S DONE, until they find a cure that will work in the body of those with CF.
THANK YOU for:
Eva turns 16 years old the day before Alexandria’s Great Strides this year! She has been practice driving with her mom – among those Dallas, TX drivers!! Believe it or not, her mom tells her she needs to drive faster. Susan explains, “She needs to go at least 30 mph!!”
Genetic modulators, the best medications currently offered to prevent the devastating impact of CF on lungs and other organs, are not effective for 10% of the CF population. Many of the 90% who qualify for the modulators (including Eva) are discovering side effects incompatible with remaining on the med such as severe anxiety or depression, elevated liver enzymes or stomach pain.
Eva had to change the modulator she was taking last year from twice to once daily due to mental health side effects. Ultimately, she stopped taking that one completely and started a new modulator. She is on a Clinical Trial for the new modulator, helping the scientists fine-tune the long-term effects of this drug; they are closely following her blood markers, especially liver enzymes. She continues to take an injection weekly to correct the complete absence of growth hormone she discovered during testing\last year. Additionally, she takes pancreatic digestive enzymes with any food she eats and multiple vitamins and supplements to help maintain lung, gut, brain, and muscle health.
Martin and I had the unique opportunity to visit the Cystic Fibrosis Foundation Therapeutics Research Lab near Boston, MA, where we met so many bright, young researchers. They are deeply committed to develop medicines that will alleviate the disease burden that all with Cystic Fibrosis experience daily. Our loved ones must take many medicines – any time they eat anything, 2-3 times on a regular schedule, 2-3 inhaled medicines before, during, and after pulmonary percussion treatments. Each section had their goal and, using incredibly sophisticated equipment, shared what they had discovered and what more they were working on. We were in tears at the end of the tour, realizing that each one of these scientists was working diligently so that our Eva – and all with CF, including those who do not yet qualify for the modulators- can live their best life UNTIL IT’S DONE, until they find a cure that will work in the body of those with CF.
THANK YOU for:
- Donating any amount to Eva’s Alliance as we Give CF the Boot?
- Joining our Eva’s Alliance team
- Walking with us on Saturday, September 26, 2026 at Menard High School in Alexandria, LA
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