Join Team DayneGerous because 44 years isn't enough!
This year I turn 41-years-old. It was just last year that 41 years was the average age of life expectancy for someone with cystic fibrosis. Now it's "all the way up" to 44 years. This just means that someone born in 2019 will on average make it to live 44 years. So not enough time! I realize nobody knows the day or time of their experation date, but I cant imagine living my life with an notion that I will only have the chance to live half the time a person usually gets (still talking averages).
We all kid about getting old and I may have even fibbed about being 28-years-old for a few years after my 28th B-day, but I know some pretty amazing people that would give anything to make it 41 years. Some people that were never given the chance, their precious lives cut too short. So, I'm going to celebrate my 41 years of being alive this year by remembering two things... 1. What a privilege it is to be alive and 2. The lives of those that did not, or will not get a chance to do the same.
Some of you may or may not know, I have a precious, funny and loveable 17-year-old cousin, Dayne, who fights CF on a daily basis. Just to stay healthy Dayne must take on a regiment of vest treatments, nebulizers, sinus rinses, high caloric diet, and lots and lots of amazing pills that help fight infection and disease. He even started taking two pills a day that target his specific CF genetic mutation, Symdeko. We are thankful for each drug that comes to market because it means we ward of the progressive nature of CF just a little bit longer. We are hopeful that there is a CURE for CF in his future, so Dayne must stay healthy as long as he can. Because of CF's progressive nature, as Dayne gets older CF will leave permanent damages to his lungs, pancreas and sinuses. His lung will develop irreversible scarring, his pancreas will build up with thick mucus causing insulin deficiency, or cystic fibrosis related diabetes (CFRD), and he will need surgeries to remove obstructions from his sinuses.
But, there is hope! Right now, the Cystic Fibrosis Foundation (CFF) has big pharmaceutical companies joining in the fight with us! The CFF has a unique and highly successful approach to developing drugs for a relatively rare disease. This drug development model, known as venture philanthropy, has created a robust pipeline of therapies that target the disease. It has been a model for other nonprofit health organizations and has been recognized by the National Institutes for Health and the U.S. Congress for its innovative impact. Nearly every approved CF drug available today was made possible because of the Foundation's venture philanthropy approach. The Cystic Fibrosis Foundation's top priority remains accelerating the development of therapies that target the basic genetic defect. Through these efforts, the life expectancy of a child with CF has doubled in the last 30 years. These efforts include events like Great Strides, partnerships with drug companies, and the generous donations from those helping to achieve the goal of making CF stand for 'Cure Found.'
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By donating, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today. Whether $5 or $500, every bit counts!
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.