When I was growing up, having a positive cystic fibrosis diagnosis did not automatically mean that I got the care and treatments I needed. It wasn't until my 22nd birthday, when I was in poor health, that I decided I needed to get healthy and speak out for myself.
My advice to all of you … CONNECT, CONNECT, CONNECT with others who share your passion in the fight against cystic fibrosis.
Being a part of the CF Foundation has given me so much more than I could have ever imagined. That is why my wife, Nanette, and I have made a commitment to people with cystic fibrosis for years to come by making a legacy gift, an enduring statement of our values.
Today I am proud to introduce More Than CF. Your struggles, your achievements, your routines and the small surprises of your every day breathe life into the Foundation's work. You can get involved by sharing your experiences with us on Facebook, Twitter and Instagram and by searching #morethanCF.
Mary Duggan Lee Watson, a longtime coach, doesn't mind taking on adversity. When her granddaughter was diagnosed with CF, she decided to fight the disease doing what she loved: sports.
Join us via live stream for the 2016 CF Foundation Volunteer Leadership Conference and make your voice heard.
I thought I would never get married -- I didn't want to burden anyone else with my CF. But, after meeting Ramon, we knew we wanted to get married and the only gift we wanted was time.
For three years, the Adult Advisory Council has been leading the way in helping the Cystic Fibrosis Foundation reach out to adults with CF. Our work as a council led to the formation of the Community Partnerships department at the Foundation and a formalized Peer-to-Peer Mentoring Program, which is being piloted in 12 CF care centers, with more to come.
I started “striding” in 2011 and have made it a goal to participate every year. Here are the top five reasons why I stride and think others should too:
When my 8-year-old daughter with CF found out that the disease is potentially fatal, I was grateful for her optimistic views on life and death. But deep down, I was saddened with the thought of a cure being so far away that I wouldn't be around to see it. Today, my fears have dwindled.