Strolling for Sarah

Dear Friends and Family,

Thank you for taking the time to visit my Great Strides page. This will be our fifteenth year walking for Great Strides and our thirteenth year as a national team. Our local Great Strides will be in person this year on May 4th at Meadowbrook Park in Urbana. **Note the change in location**

Sarah is close to the end of her freshman year at the University Laboratory High School. She is having a blast in the Drama Club and the Dungeons and Dragons club! Outside of school she is learning to play the pipe organ, helping to build this year's robot with her FIRST Robotics Club teammates on Ctrl-Z, and working toward her black belt in Tae Kwon Do. Sarah is also this year’s Great Strides Ambassador for our local CF Foundation chapter! You may have seen some of her social media posts.

Sarah’s health has been strong and steady this past year, now that she is taking Trikafta. Trikafta is the new combination of three drugs created by Vertex Pharmaceuticals, with financial support from the Cystic Fibrosis Foundation. This therapy corrects the nonfunctional protein in many CF patients. Her growth has been so good that she is now taller than I am! Trikafta is not a cure, but it is a game changer, and it is what we have been working so hard toward.

As amazing as Trikafta is, there are still 10% of CF patients who cannot benefit from it, so the search continues for a therapy that will improve the health all CF kids.  Research is also ongoing in other key areas such as new antibiotics that will treat patients with drug-resistant bacterial infections. The CFF and those of us serving as advocates are currently asking our legislators to support the PASTEUR act, which would provide federal support to overcome barriers to development of new antibiotics. To sign up for advocacy alerts that make it easy to add your voice, text FIGHTCF to 96387.

Please help Sarah by joining us on team Strolling for Sarah. Your company on the walk would mean so much. If you can't be there, please consider supporting a walker on our team. We are helping add tomorrows for those living with cystic fibrosis!

Thank you,
Rachel