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Great Strides is finally back in person!! We will be gathering at South Street Seaport at 9am on Sunday, May 15th. As many of you know, the past two years have been extremely isolating for our family. We have taken extra safety precautions during Covid because of Cystic Fibrosis which means we still aren't seeing most people indoors or eating and socializing indoors. Honestly, if you haven't been outside on Grand Street while we walk our dog, it is likely we haven't seen you in a long time. It's sad that this has been our new normal but when you have spend your lifetime fearing life expectancy numbers, you do what you can to increase it!
The CFF registry shows that 57% of patients with CF are now over 18 years old! That's HUGE. As my age cohort and above are leading the charge in aging with CF, I moderated a panel during Research Con last month called, "Is It My Age, or is It My CF?" with three fabulous researchers/medical providers who specialize in hormones/menopause, palliative care and GI/colon cancer. You can view the panel here https://www.youtube.com/watch?v=J9Ge7pqBZRg
Speaking of increased life expectancy, I just passed the two year mark of being on Trikafta, which has certainly provided benefits. I have more energy (not just anxious energy!), I can breathe deeper and my recognizable cough has mostly disappeared. I still maintain all of my cumbersome treatments and medications and there are some side effects so I am VERY excited that research continues for better drugs and interventions, gene therapy and ultimately a cure. 10% of people with CF do not have any treatments like Trikafta so, with your generous support, there will be miraculous drugs for all who are born with Cystic Fibrosis! Thank you so much!!!!
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