Thank you for taking the time to visit my Great Strides page. This will be our fourteenth year walking for Great Strides and our twelfth year as a national team. Our local Great Strides will be in person this year on May 13th at Hessel Park in Champaign.
Sarah is close to the end of her sub-freshman year at the University Laboratory High School (a Subbie at Uni to locals). She has had a fantastic transition to this new school, joining the drama club and performing as an extra in Much Ado About Nothing and working as backstage crew/Toto’s handler for The Wizard of Oz. She has made new friends, is taking Latin and looking forward to the school trip to Rome her Junior Year, and is enjoying going to school dances and drama club parties. She is also continuing Tae Kwon Do and piano lessons.
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!