Dear Friends and Family:
2023 certainly has had its challenges! Matt and I got married last July, and that is a fun phase to be in! Unfortunately, my parents’ health has declined significantly, so we are in full time caregiver mode too. Please keep them in your prayers. I hope that you and your family are safe and happy! With everything going on, we are still making Great Strides to find cure for CF!
54 years ago my sister Liesl lost her battle with Cystic Fibrosis. She was only 2 ½ years old. It’s so hard to believe that more than half a century has passed. Her namesake, my niece Liesl, had her first child in November, 2020, a beautiful, healthy girl named Evelyn Rose.
Last month, CF announced that the median expected life span for a CF patient is in the mid-50’s! That’s what your support has done for us! Trikafta and the other drugs are miracles for a large portion of our CF population. This drug is approved for patients 6 years and older with certain genetic defect combinations…but it covers 90% of the combinations out there! This is a life-changing drug for those who are taking it…they are seeing significant improvements in lung function and healthy weight maintenance. Several of our local CF families are benefitting from these new drugs and are excited about the miracle that they represent. Many other families are still waiting for their miracle. Researchers are continuing to work on variations of this drug that will help patients with the other mutations. The hope that the other families have…that the research will continue, and drugs will become available to save their children’s lives.
I am proud to say that I have been a part of Great Strides since the first one, more than 35 years ago. Many of you have been on this journey with me for many of those years. I am once again asking for your help. Great Strides is our single biggest fundraiser….can you help again this year? I once again am asking you to open your hearts and your wallets, and help me with a donation. My goal is $10,000 this year. I will be matching all contributions received (up to a total of $10,000), so make me pay!