The Cystic Fibrosis Lung Transplant Consortium Biorepository and Patient Registry, in collaboration with Cleveland Clinic, will provide critical clinical data and samples to support future research investigating complications of lung transplant.
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The 23rd annual Ultimate Golf Experience (UGE) brought together a star-studded lineup of entertainers and friends, who gathered in Newport Coast, Calif. to raise funds in the fight against cystic fibrosis.
Watch the entire leadership conference, including all of the break-out sessions and Medical Hot Topics, from start to finish.
I began fundraising and raising CF awareness soon after my son, Aidan, was diagnosed as a baby. After years of successful fundraiser walks, Aidan asked me to stop — opening my eyes to the difference between being a mom of someone with CF and being the person who is living with CF.
Today, there are close to 40,000 people in the United States with CF due in large part to more people living longer into adulthood, signaling a shift in what it means to live with CF in the modern era.
Having a friend with cystic fibrosis has made me determined to do all that I can to help her fight for a cure. That includes leading the charge for making legacy donations to the Cystic Fibrosis Foundation.
I used the Cystic Fibrosis Foundation Patient Registry Annual Data Report to ask my care teams questions to more effectively manage my CF. You can, too.
Jedd Williams of Cisco Systems Inc. has raised more than $1,000,000 to support the mission of the Foundation after expanding his personal Great Strides team to a national corporate team.
My son, Arjun, has had the deck stacked against him in some ways. He was born early, with cystic fibrosis, and needed surgery. His resilience, and my hopes for his future, keep me inspired.
As I reflect on the 30th anniversary of Great Strides and my 35-year journey living with cystic fibrosis, I celebrate all the CF community has accomplished together and am thankful to be able to share my story as a 2018 National Ambassador.