Hello! I hope this finds you well! I’m writing because it's that time again - May is Cystic Fibrosis awareness month. As you well know, each year our family fundraises for Julia - our daughter, steppie, sister, aunt, friend, colleague and multi-talented art director for Phish. Most likely you have donated in her name in the past. And here we are again! Team Fer Jules still going strong! We will never back down – we can’t and we won’t until CF stands for Cure Found.
Because of the incredible work of the Cystic Fibrosis Foundation and their dedication to scientific advancement, the median age of survival for someone with CF has climbed to 47 years old. Just to give you a perspective, in the 1950’s children were lucky to make it to their 10th birthday. When Julia was diagnosed, it 'rose' to 18. While the advancements are astounding, the painful truth is that cystic fibrosis still regularly takes the lives of young people. It's unacceptable, and we hope you will join the fight again this year to help change this.
It is more crucial than ever that we continue the development of drug therapies, especially alternatives to antibiotics for CF patients who battle recurrent infections and develop resistance. The CFF very recently announced their support of up to $5M to support the first-ever controlled clinical study of phage therapy, reaffirming the Foundation's commitment to advance solutions to the growing challenge of antibiotic resistance.
The new drugs she is on have made an incredible impact on her life. She hasn't had a hospital stay in over 2 years which is remarkable. This is due to science and research through donations made to the CF Foundation. Patients like Julia are on the front lines, taking advantage of new therapies as soon as they become available, and advancing science and making life with CF manageable for future generations. They are the key to a cure!
Please consider making another donation this year in her name. Your gift to team Fer Jules makes an extraordinary impact on the lives of those affected! As always, thank you for supporting us all of these years. Together, we are going to find a cure, and it's going to happen in Julia's lifetime. I truly believe that.
Cheryl and Scott Murawski
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.