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.
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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.
March on the Hill brings a mix of new and familiar faces to Capitol Hill every year. The connections and stories that our advocates share with their elected officials are making lasting impressions that impact the entire CF community. And as this event has grown, so too has the cystic fibrosis story.
We have about 70 chapters and offices across the country that work diligently to raise funds and support our community in the search for a cure. They host events (including virtually and outdoors) and serve as a hub for the CF community. Get to know them!
In just four short years, Karen Sani has become the ultimate CF Foundation teamMATE at the Northeastern New York Chapter. She is an inspirational volunteer who motivates everyone around her to support those with cystic fibrosis.
Last month, Senator Chuck Grassley (R-Iowa) and I partnered to create the Cystic Fibrosis Caucus in the U.S. Senate. We are working toward a day when CF stands for “Cured Forever.”
Ever wonder about an aspect of cystic fibrosis that you would love someone to research? Find out how you can submit a question in our first community-driven research project.
A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.