Sabrina Santiago

Having two daughters, a nephew, and a whole community of friends affected by cystic fibrosis are the main reasons why I fundraise yearly for the Cystic Fibrosis Foundation Great Strides event. This organization does so much for the CF community, one of the most important being: funding research. This disease can be absolutely devastating, but lucky for us, significant advancements have been made since the 1950's and the disease has become more manageable. Average life expectancy has risen dramatically throughout the years, and for that I'm extremely grateful. With that being said, I still really don't like to put much focus on life expectancy, because that's the stuff that steals joy and causes stress regardless of the increases we have seen. But, just to kind of paint a little picture and show you why donations matter, and how funding research is extremely critical and necessary, I'm going to include a little time-line.

In the 1950's, the average life expectancy was five years old. FIVE YEARS OLD. In the 1960's-1970's, that number raised to ages 10-15. Then, going into the 90's, average life expectancy gradually increased to 31. From 1993 to 2017, this number increased to 44. [Cystic-fibrosis.com] Nowadays, babies born with CF are expected to live into their 40's, 50's, and even beyond! Medical advancements such as genetic testing, the development of pancreatic enzymes, airway clearance techniques, antistaphylococcal and antipseudomonal antibiotics, lung transplants and DNase therapies are the reasons why we have been lucky enough to see such huge improvements in this area. With more and more research taking place, there are so many new possibilities on the horizon and let me say this: I have never felt more hopeful for my babies and our community of warriors. New modulator therapies have been made available in recent years which have been another game changer for so many. These modulators still have a long way to go, though, which is only another major reason to keep advocating and raising awareness. Unfortunately modulators aren't compatible with all of the faulty cftr genes and there's a whole population of people who aren't reacting well to these medications.

To put it simply, we still have so much to be loud about! And as you now know, fundraising is absolutely critical to the development of medicine and research into the disease! May is Cystic Fibrosis awareness month, so if you're feeling generous and are able to give towards a great cause, please consider our fundraiser!! There is no amount too small! I'm extremely grateful that we are witnessing such a positive trend in the CF community, but I will be forever waiting, praying, and advocating for more, until CF stands for CURE FOUND and all our warriors can live free of the burden of this disease and all that it comes with