Advocate for caregivers & Lewy body dementia (LBD) awareness; Internationally known classical music publicist/strategist
“Mary Lou is a gifted speaker and provided critical insights into the lived experience of Lewy body dementia and related disorders—an invaluable resource for us.”
—Dr. David Irwin, Associate Professor of Neurology, University of Pennsylvania
Mary Lou Falcone is the author of I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia; an executive producer on the new documentary film Facing the Wind; and a tireless advocate and spokesperson for both Lewy body dementia awareness and caregivers. A sought-after keynote speaker, she has given talks on her caregiving journey and LBD awareness, as well as presentations screening the film Facing the Wind, at the Mayo Clinic, Lincoln Center, University of Michigan, University of Nebraska Medical Center, University of Pennsylvania, Society of Neuroimmune Pharmacology International Conference, Alzheimer’s Foundation Care Connection, and University of Wisconsin Geriatrics at Madison, to name a few.
Over 7 million Americans now have dementia, and this number is steadily growing. Of those, over 1.4 million have Lewy body dementia. After Alzheimer’s disease, LBD is the second most common type of progressive dementia. LBD is often misdiagnosed and is not rare. It’s a neurodegenerative disease characterized by the accumulation of abnormal protein deposits called Lewy bodies in the brain. Symptoms include problems with cognition, slowness of movement, hallucinations, fluctuations in mental and physical abilities, REM sleep disorder, and sensitivity to medications. Greater awareness of LBD is urgently needed to lead to better diagnosis and treatment, and Mary Lou Falcone’s LBD caregiving story is helping to answer that need.
In her presentations, Falcone takes audiences on a cathartic journey of caregiving that is filled with hope, laughter, and tears. At the age of 10, her life was forever changed when her father had a massive stroke that took away his ability to speak. While her mother worked three jobs, Falcone cared for not only her father but two younger siblings. Echoes of her childhood challenge returned when she faced the biggest test of her life: her soulmate of 47 years, the celebrated artist Nicky Zann, was diagnosed with the little-known disease Lewy body dementia, and she became his sole caregiver until LBD claimed him. Falcone shares her lived experience and the invaluable resources she discovered for dealing with LBD, including the Lewy Body Dementia Resource Center for which she is now a board member.
Falcone is an executive producer and frequent spokesperson for the documentary about LBD, Facing the Wind. It is a love story about people with Lewy body dementia, the spouses who care for them, and the remarkable community where they find sustenance and support. With honesty, tenderness and black humor, Facing the Wind invites viewers into the lives of people with LBD and their caregivers, revealing how a mutual support community can be an antidote to despair. Falcone has led screenings of the film followed by lively Q&A discussions across the country.
For over 50 years, Falcone has been a classical music public relations strategist who created M.L. Falcone, Public Relations in 1974, and guided the careers of artists from Renée Fleming and Van Cliburn to James Taylor, while supporting such institutions as Carnegie Hall and the Vienna Philharmonic. Falcone attended the Curtis Institute of Music where she studied voice. Upon graduating, she sang professionally for eight years with such organizations as the NET Opera Theatre and the St. Paul Opera Company, soloed with orchestras, sang oratorio, and appeared in recitals. She also chaired the music department at the Baldwin School in Bryn Mawr, Pennsylvania. For 22 years Falcone was on the faculty of The Juilliard School, and has lectured at the Mozarteum University in Salzburg, the Solti Accademia in Italy, Manhattan School of Music, Mannes College of the New School, and the Curtis Institute of Music.
Mary Lou Falcone is currently a member of the Executive Committee of the Avery Fisher Artist Program of Lincoln Center, is an advisor to DigiCARE Realized Inc., and formerly served on the Board of Overseers of the Curtis Institute, plus chaired both the Marilyn Horne Foundation and the Vatican/Rome based Voices of Faith.
Mary Lou Falcone’s beloved husband, Nicky Zann, passed away from LBD in July 2020.
Praise for Mary Lou Falcone’s Talks
“One of the more moving and insightful of the many talks we’ve presented at The Church was Mary Lou Falcone’s. For weeks afterward, attendees told me how moving, meaningful, and even practical it was for them in caring for loved ones, and not only loved ones with LBD. Her scope is both personal and broad, and a labor of love well and generously communicated.”
—April Gornik, Co-Founder, The Church (Sag Harbor)
“We have had numerous opportunities to listen to Ms. Falcone describe her journey with the impact of advanced dementia on her beloved husband. As she took us on an odyssey through her narrative book and leading up to the documentary film, she was able to bring to life the brutal reality of this life tragedy in a way that is both understandable and directly connects to the core of the human spirit. There was no dry eye in the room and yet there was also no audience that did not leave energized and focused on the urgency to find a cure.”
—Dr. Jeffrey Gold, President, University of Nebraska
“Mary Lou Falcone recently presented a one-hour symposium on the patient and caregiver experience in LBD to faculty, staff and trainees at Penn. This was a widely attended and highly successful event. Mary Lou provided a candid and engaging account of her experiences caring for her late husband and her work in advocacy for LBD. She is a gifted speaker and provided critical insights into the lived experience of LBD and related disorders which was an invaluable resource for our team.”
—Dr. David Irwin, Associate Professor of Neurology, University of Pennsylvania
“I recently had the pleasure of hosting Mary Lou Falcone at Inspir Senior Living. She is a true professional in every sense of the word. Beyond her professionalism, Mary Lou is warm, engaging, and an incredibly compelling speaker. She tackles a challenging topic with both empathy and grace, making it deeply relatable for the audience.”
—Lisa Kapp, Director of Strategic Partnership / Inspir – Carnegie Hill
“I really enjoyed participating in this presentation for the National Continuing Care Residents Association. There is a very human side to dementia that I think the format was able to express thanks to Mary Lou. Thank you so much, Mary Lou, for sharing your story. It’s important for people to hear about experiences like yours.”
—Dr. Matthew Barrett, Professor of Neurology, Virginia Commonwealth University
“Mary Lou Falcone is an articulate and personable speaker. She gave a superb talk, and I found myself close to tears…she was riveting. This was the best program National Continuing Care Residents Association (NaCCRA) has done. I’m going to get all the residents here to watch it…and management.”
—Charles H. Webb, MD MDiv, retired Associate Professor of Internal Medicine, Glennan Center for Geriatrics and Gerontology, Eastern Virginia Medical School, Norfolk
Praise for I Didn’t See It Coming
“Mary Lou Falcone is an expert storyteller. After years of telling other people’s stories, she now tells her own compelling story.”
—James Taylor, Singer-songwriter
“A beautiful story of music, faith, compassion, friendship, and undying love.”
—David Hyde Pierce, Actor
“…a beautifully rendered, inspiring chronicle of determination, resilience, and boundless love.”
—Renée Fleming, Soprano
“…An important book for caregivers who are struggling with someone affected by dementia…”
—Jaap van Zweden, Music Director, New York Philharmonic
—Aaltje van Zweden, Author and Founder, Papageno Foundation
