My Great Strides Story
Annelle Tanner
Fundraising for Alexandria Great Strides
Annelle Tanner
Well, here we are in 2025, much closer to a cure BUT NOT THERE YET!!
This year found our Eva who will be 15 years old one week before the walk, becoming a STRONG advocate for herself and the other 105,000 adults and children worldwide, 40,000 in the US, who have Cystic Fibrosis. She shared her story with her home Dallas CFF chapter, her entire middle school, and an entire school of nursing!! She KNOWS what the research has found that helps her breathe better, digest her food, maintain strength for the grueling hours of practice for the theatre productions she loves. She even participated in a Theatre camp in Los Angeles directed by the New York School of Performing Arts thanks to Make a Wish Foundation.
BUT there is more to do: she cannot take a full dose of the gene modulator due to side effects. And she has to take an injection weekly because she makes no growth hormone. She still spends hours daily doing breathing treatments, taking multiple medicines, supplements, and enzymes, sticking to her healthy gluten-free diet, engaging in activities that keep her body moving and safe from exposure to dangerous bacteria that would hospitalize her. This young lady is so aware of changes in the way she feels at any moment, she is almost overly-alert to any new pain or sound or bump, ready to do something to make it go away. . You know, we are always told to “listen to your body,” right? But Eva admits that while she is excellent at the listening part, it can greatly increase her anxiety if she cannot know right away that what she is feeling or hearing is “within normal limits.” This is yet another unanticipated consequence of having Cystic Fibrosis, a chronic disease with no cure…yet.
Thankfully, YOU can continue – or join us as a brand new fighter – to support the work of the Cystic Fibrosis Foundation. Our Executive Director even shared this from his ChatGPT inquiry:
“The Cystic Fibrosis community is widely regarded as the most successful in the world at partnering with its disease foundation- the Cystic Fibrosis Foundation- to bring forward therapies that have fundamentally transformed the course of the disease.”
Your donation means TRANSFORMATIVE LIFE to Eva.
THANK YOU for:
This year found our Eva who will be 15 years old one week before the walk, becoming a STRONG advocate for herself and the other 105,000 adults and children worldwide, 40,000 in the US, who have Cystic Fibrosis. She shared her story with her home Dallas CFF chapter, her entire middle school, and an entire school of nursing!! She KNOWS what the research has found that helps her breathe better, digest her food, maintain strength for the grueling hours of practice for the theatre productions she loves. She even participated in a Theatre camp in Los Angeles directed by the New York School of Performing Arts thanks to Make a Wish Foundation.
BUT there is more to do: she cannot take a full dose of the gene modulator due to side effects. And she has to take an injection weekly because she makes no growth hormone. She still spends hours daily doing breathing treatments, taking multiple medicines, supplements, and enzymes, sticking to her healthy gluten-free diet, engaging in activities that keep her body moving and safe from exposure to dangerous bacteria that would hospitalize her. This young lady is so aware of changes in the way she feels at any moment, she is almost overly-alert to any new pain or sound or bump, ready to do something to make it go away. . You know, we are always told to “listen to your body,” right? But Eva admits that while she is excellent at the listening part, it can greatly increase her anxiety if she cannot know right away that what she is feeling or hearing is “within normal limits.” This is yet another unanticipated consequence of having Cystic Fibrosis, a chronic disease with no cure…yet.
Thankfully, YOU can continue – or join us as a brand new fighter – to support the work of the Cystic Fibrosis Foundation. Our Executive Director even shared this from his ChatGPT inquiry:
“The Cystic Fibrosis community is widely regarded as the most successful in the world at partnering with its disease foundation- the Cystic Fibrosis Foundation- to bring forward therapies that have fundamentally transformed the course of the disease.”
Your donation means TRANSFORMATIVE LIFE to Eva.
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 27 at Menard High School in Alexandria, LA.
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