Founded by Families,
built for families.
The Lewy Body Dementia Resource Center was created by people who lived it firsthand — former caregivers who experienced the lack of help available and decided to change it. We’re a 501(c)(3) non-profit providing free information, support, and community to everyone navigating LBD.
Your loved one has received a Lewy Body Dementia diagnosis & you’re worried about what’s next
You need help locating the right doctors, therapists, and activities. You want to feel secure knowing that your loved one is going to be taken care of with love, support, and care.
But right now, your head is spinning. You’re struggling to cope with the changes you see affecting their motor functioning, impaired thinking, and mood.
You’re feeling overwhelmed with the new daily care tasks of bathing, dressing, and managing medications.
Please know that you’re not alone.
Created by those who have experienced a Lewy Body Dementia diagnosis first-hand, the Lewy Body Dementia Resource Center provides
A comprehensive collection of information about Lewy Body Dementia, including symptoms, treatment, and medications.
Listings of neurologists, therapists, and other professionals who specialize in Lewy Body Dementia.
Therapeutic and recreational activities designed to provide the best quality of life possible.
A live helpline that’s available seven days a week, to address any questions or concerns you may have.
A community of people offering love, support, and know-how to help you and your loved ones through the road ahead.
As the trusted U.S. national nonprofit designed, managed, and operated by people with lived experience of Lewy body dementia, we raise crucially needed awareness of Lewy body dementia to health care professionals and the general public and offer loving support and services to people with LBD and their care partners. We promote essential scientific advances and research.
To foster early diagnosis and enhance the quality of life for people with LBD and their care partners with an all-inclusive website, call center, and devoted care. We advocate for increased funding and research for Lewy body dementia and promote essential scientific advances and research.
Through outreach and speaking engagements, our mission is to educate the healthcare community and the general public about LBD symptoms and prognosis. We believe that awareness of this little known condition will help improve the quality of life for those with LBD, their caregivers, and loved ones.
Every service we offer is completely free.
The only live LBD helpline of its kind — staffed by knowledgeable specialists, not automated systems. Available 12 hours a day, 7 days a week at 516-218-2026 or 833-LBD-LINE.
📋In-depth guides on symptoms, diagnosis, medications, and caregiving. Downloadable tools like symptom trackers, medical alert cards, and communication cards — all curated by LBD experts.
🔍Curated listings of neurologists, therapists, home health aides, and other professionals who specialize in LBD — searchable by state and region across the U.S. and internationally.
👥Support groups, Brian's Buddies social program, webinars, podcasts, and a network of families who truly understand. Because navigating LBD is easier when you don't have to do it alone.
🎬Videos, documentaries, interviews, and the "Views From Within" series featuring real stories from people living with LBD. Including "Facing the Wind," which premiered at Lincoln Center.
LBD resources available in 11 languages including Spanish, French, Hebrew, Chinese, Russian, Ukrainian, Korean, Turkish, Arabic, and Dutch — with more languages being added regularly.
The only live LBD helpline of its kind — staffed by knowledgeable specialists, not automated systems. Available 12 hours a day, 7 days a week at 516-218-2026 or 833-LBD-LINE.
📋In-depth guides on symptoms, diagnosis, medications, and caregiving. Downloadable tools like symptom trackers, medical alert cards, and communication cards — all curated by LBD experts.
🔍Curated listings of neurologists, therapists, home health aides, and other professionals who specialize in LBD — searchable by state and region across the U.S. and internationally.
Support groups, Brian's Buddies social program, webinars, podcasts, and a network of families who truly understand. Because navigating LBD is easier when you don't have to do it alone.
🎬Videos, documentaries, interviews, and the "Views From Within" series featuring real stories from people living with LBD. Including "Facing the Wind," which premiered at Lincoln Center.
LBD resources available in 11 languages including Spanish, French, Hebrew, Chinese, Russian, Ukrainian, Korean, Turkish, Arabic, and Dutch — with more languages being added regularly.
The Lewy Body Dementia Resource Center is an organization headed solely by former care partners of people with Lewy body dementia. Our board members consist of experts in the field of LBD, professionals who have been affected by a family member with the disease, and people who themselves are living with LBD.
Founder & Executive Director
Norma’s knowledge and experience with Lewy body dementia began with the personal care of her mother, Lillian, who had LBD for many years. Lil is the inspiration behind the founding of LBDRC. Norma has been facilitating the only New York Metro area LBD caregivers support groups since 2008. She also leads a national group for people living with LBD which has been lauded. Norma has been trained as an End-of-Life Doula through the International End-of-Life Doula Association (INELDA). She served on the board of directors of the Lewy Body Dementia Association for three years before launching the LBD Resource Center in 2016 to provide much needed support and resources on more personal and connective levels.
Norma worked as executive assistant to the CFO at The New York Times Company for over 20 years. While there, she served as chairperson of the work/life committee of The New York Times’ women’s affinity group and initiated and ran their eldercare support group. Her expertise working with the top executives at The Times, as well as her managerial experience as executive director and a co-founder of What BETTER Looks Like, a nonprofit organization which partners with communities to help individuals imagine, articulate, and create visions for a better world, has prepared her to lead the LBD Resource Center which is very dear to her heart.
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Neurologist, Montefiore Medical Center & Albert Einstein College of Medicine
Dementia specialist at Montefiore's Center for the Aging Brain. UCNS-accredited fellowship in Geriatric Neurology. Recipient of the Leo M. Davidoff Teaching Award.
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Board Member & Author
Author of "I Didn't See It Coming" -- a memoir on caregiving and LBD. Classical music PR strategist for 50 years. Her husband Nicky Zann passed from LBD in 2020.
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Division Chief of Geriatrics, Beth Israel; Associate Professor, Icahn School of Medicine at Mount Sinai
Geriatrics expert and Castle Connolly Top Doctor. Fellowship in Geriatrics at NYU Hospital-Bellevue. Active in clinical and academic geriatrics for decades.
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Professor of Neurology; Director, Comprehensive Center for Brain Health, University of Miami
Internationally recognized LBD expert. Over 200 published scientific papers. Leads clinical trials for neurodegenerative disease funded by NIH, Alzheimer's Association, and more.
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Neurologist & Movement Disorder Specialist, Hartford Healthcare
Specialist in Parkinson's disease, LBD, and atypical Parkinson's. Movement disorders fellowship at Mount Sinai Beth Israel. Fluent in Russian.
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Board Member; Banking Enforcement Lawyer
14 years as Assistant District Attorney under Manhattan DA Robert Morgenthau. Cared for her mother who had LBD.
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Attending Physician, Kings County Hospital; Clinical Associate Professor, SUNY Downstate
25+ years in neuropsychiatry. Graduated Phi Beta Kappa from Barnard. PhD from Albert Einstein. Published in peer-reviewed journals.
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Program Director, Mount Sinai Downtown Neurology; Assistant Professor, Icahn School of Medicine
Movement disorders specialist. Recipient of ACGME's Parker J. Palmer Courage to Teach Award and 2017 AAN Program Director Recognition Award.
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Founder, Health Dame Podcast
An accomplished health policy/public affairs expert with over 40 years’ experience working in Washington, DC, Robin Strongin has a lot to say about health care and does so on her recently launched HEALTH DAME platform.
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Geriatric Nurse Practitioner, NYU Langone Medical Center
15+ years as a nurse with specialized LBD expertise developed at NYU's Pearl Barlow Center under Dr. James Galvin.
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Author & Performer; CEO, redBrick Agency
Author of "Dangerous When Wet," partly about his mother's LBD journey. Two-time StorySLAM champion at The Moth.
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Retired Asst. Vice President, Federal Reserve Bank of Cleveland
30-year career with the Federal Reserve System. Diagnosed with LBD in 2016. A voice for those living with the disease.
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Retired Educator, NYC Department of Education
30+ years teaching English at NYC's first alternative high school. Her father was diagnosed with LBD.
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Founder, Purple Angel Dementia Campaign; Author
Diagnosed with LBD in 2010. Founded the Purple Angel campaign -- now a global movement with 1,200+ ambassadors in 60+ countries.
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Social Worker, Townhouse Center for Rehabilitation & Nursing
Master's in Social Work from Adelphi. Oversees the dementia unit. Her father had LBD.
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Retired Psychoanalyst & Trauma Therapist
38 years of private practice in Manhattan. Cared for her husband Paul who died from LBD in May 2022.
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Social Media Manager, LBDRC
Caregiver for her father from 1999-2009. 15+ years in administration for the Central Administration of Canada.
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Assoc. Director, Center for the Aging Brain; Director, Memory Disorders Center, Montefiore
Fellowship Director for Geriatric Neurology at Montefiore. Research focused on cognitive decline in underserved populations.
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Chairman, RKO Pictures; President, RKO Stage
A mentor to Norma Loeb who encouraged her to found LBDRC. Former Navy Fighter Pilot, Harvard Business School graduate. His wife Dina Merrill passed from LBD in 2017.
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Contributing Editor, Vanity Fair; Award-winning Biographer
Front Page Award-winning journalist. Author of biographies of Montgomery Clift, Marlon Brando, and Jane Fonda. Her husband Tom Palumbo had LBD. Passed from Covid-19 on April 2, 2020.
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Retired Film Production Accountant; Financial Consultant
Community activist, film industry leader. Chair of Community Board Three, Manhattan. Caregiver for her husband Charles who had LBD. Passed on October 4, 2021.
Founded by Norma Loeb, LBDRC provides free support, education, and community to individuals and families navigating Lewy body dementia — across the U.S. and around the world.
📞The information on this website and our Helpline is provided as a resource for LBD caregivers, but is not intended as an endorsement of any product, medication, or medical procedure, and is not a substitute for professional medical advice.
© 2026 Lewy Body Dementia Resource Center. All Rights Reserved.