Dear Family, Friends and Colleagues,
Thank you for visiting my page.
I have been honored this year to participate in a fund raising campaign for The Cystic Fibrosis Foundation. It is for young professionals age 25-45, but they made an exception for an old guy like myself!
I come with hat in hand. As many of you know, CF is a part of everyday life for our family. Our son Carl, age 16, was diagnosed with Cystic Fibrosis at birth. He is my HERO! He fights this orphan disease every day with 35-50 pills, breathing treatments, airway clearances, uncountable doctor visits etc...Because of these therapies, Carl is doing very well.
Carl just started the new and promising drug for CF patients named Trikafta. Hopefully this medicine is a game changer....but it is not enough. As mentioned before, this is an orphan disease which means research dollars come from donations that make breakthroughs like Trikafta possible.
Please consider helping all the patients out there living with CF until those letters stand for CURE FOUND! When Carl was born the life expectancy was 28 years old. It now is past 40 years! It is not long enough!
My Family and the CF Community thank you from the bottom of our hearts.