Dear Friends and Family,
Thank you for taking the time to visit my Great Strides page. This will be our thirteenth year walking for Great Strides and our eleventh year as a national team. Our local Great Strides will be in person this year on May 7th at Hessel Park in Champaign.
Sarah is close to the end of seventh grade! With vaccines and now antivirals available she has returned to in-person school as well as piano lessons and tae kwon do. We are grateful for all of our friends who understood her heightened risk and have been willing to wear masks and take other precautions.
Sarah had ups and downs in 2021, with her first long hospital stay for IV antibiotics, her first allergic reaction to said IV antibiotics, her third sinus surgery, removal of her feeding tube, and the long-awaited start of Trikafta. Trikafta is the new combination of three drugs created by Vertex Pharmaceuticals, with financial support from the Cystic Fibrosis Foundation. This therapy treats the underlying defect in many CF patients, including Sarah. You can learn more here https://www.trikafta.com/how-trikafta-works. The first change we noticed after Sarah started the treatment was that she became HUNGRY! She has seen increases in lung function, weight, and height – she is almost as tall as I am! I know that does not seem like a tremendous feat (ha ha), but short stature often accompanies CF due to malnutrition, and her medical team is thrilled with her growth. 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 bacteria permanently colonizing their lungs (or allergic reactions to existing antibiotics, a wrinkle we were not expecting!).
I am continuing my advocacy in support of these efforts as the CFF’s Congressional Captain for IL15, and our chapter’s 2021 Advocate of the Year. I’m looking for advocacy team members, and if you don’t live in IL15, your Congressional Captain is likely also looking for team members! We are currently promoting 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!