Margarete Cassalina

Patient Leader

Margarete Cassalina is widely known as a motivational speaker, award-winning author, and national advocate for the Cystic Fibrosis Foundation, but most importantly, she is a mother of two children, Eric and Jena, both born with cystic fibrosis (CF). Margarete has been a dedicated volunteer of the Cystic Fibrosis Foundation since 1991. She has served as National Leadership Council Member for 10 years, National Public Advocacy Co-Chair for 3 years, and National Volunteer Leadership Co-Chair for 2 years. As National Public Advocacy co-chair, Margarete helped pioneer volunteer advocacy efforts, leading volunteers to Capitol Hill, and helped the launch of the Cystic Fibrosis Congressional Caucus which assisted in getting newborn screening in all 50 states. Regionally, in New York, she has served as Board Member of the Northeast Albany CF Chapter. Locally, Margarete organizes and runs numerous events to increase awareness and has raised millions of dollars for The Cystic Fibrosis Foundation. Margarete speaks straight-from-the-heart about life and cystic fibrosis in Beyond Breathing, a memoir written after her daughter Jena 'moved up' to heaven in 2006 at the age of 13. In her new book, See You at Sunset, Margarete bridges you from her non-fiction life into the fictional world of her imagination while still adhering to her passion for bringing awareness to cystic fibrosis. Margarete is a frequent speaker at CF fundraisers and events across the country. She also speaks to groups about loss, hardship, and finding the beauty in the broken. She has dedicated her life to finding the ultimate cure so that one day CF will stand for “Cure Found.”

Location

Milton, NY

Nominations

Best in Show: Facebook Advocating for Another Best in Show: Community Patient Leader Hero Best Kept Secret

I've only known Margarete through social media.. we share the common call wanting to find a cure for Cystic Fibrosis a disease that both of our children suffer from., And whom she has lost a child to..she has given me more laughter and encouragement and Hope in just a very few short months, I feel I've known her my lifetime.. her hope is contagious  — Tricia

Margarete Is relentless and a leader who not only advocates for Cystic Fibrosis she stands for all those affected by the disease and has done so for over 28 years. She is a hero and the voice to share her personal journey with courage, hope and passion. She is worthy of this award & recognition as a Patient Leader as an influencer with compassion.  — Brien

Margarete Cassalina
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