Amy Van Vranken

It is once again Great Strides season!  I want to thank you for your continued support over the years which has helped the Cystic Fibrosis Foundation make such tremendous progress.  

As you know, cystic fibrosis (CF) has been my passion since I was ten years old.  I was introduced to this disease when I met my good friend, Tressa, who lost her battle with CF our freshman year of high school.  Her life was cut way too short and that has stayed with me to this day.  

Typically, this is where I would also share my friend Allison's story over the past year, but I think it is best you hear the update straight from her this time around.  

An Update From Allison:

365 days on Trikafta this year. I am the perfect Trikafta candidate. BUT ALSO - 114 days inpatient at UT Southwestern. 10 separate hospital stays. 140 days on IV medication at home to help come off the medications that create significant side effects every time I have to put the yucky *crap* in my body to stay at baseline. 254 days of spending my energy, time and mental drive to get back to BASELINE (not even back to feeling *good*) I’m tired – but I won’t stop fighting as long as you all continue to fight with me.    The most common question people ask me is, “are you not taking that new medicine anymore?“ The answer is yes – and it saved my life, but it hasn’t CHANGED my life as significantly as it has others. AND THAT IS OKAY. I am so happy that Trikafta improved the quality of so many lives. I’m so grateful that it saved my life, but I am also the perfect example of the fact that it was never a cure. I have spent so many years advocating and fundraising, and we all got to witness a true miracle. When I started realizing this wasn’t going to be MY miracle, I told Amy my main goal with fundraising now is to try and make people in my village aware that we cannot stop fighting until it’s COMPLETELY done for all of us. We have to feel blessed that we are living in the coolest time CF has ever seen, but just because we see so much progress and positivity – we have to also take a step back and realize…. we still have a lot of fighting to do!!

Like I said before, your donations have ensured the Foundation continues to make tremendous progress, but we are not done yet!  We still need your help to CURE this disease.  I would like to ask you to help us add tomorrows for all of those living with CF by donating to our Great Strides team. Allison and I have once again set a goal of $20,000 for the team.  Any amount you can donate is greatly appreciated. 

To learn more about CF and the CF Foundation, visit www.cff.org.

Thank you for supporting Great Strides! Together, we can make a difference and I know one day we will be able to say that CF stand for Cure Found!

Until It's Done,
Amy