📞 Helpline: 516-218-2026 or 833-LBD-LINE | Available 365 days a year | Support our mission →
📞 Helpline: 516-218-2026 or 833-LBD-LINE
Available 12 hours a day, 7 days a week

— Our Story

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.

Only
Live helpline for lewy body dementia in the U.S. available 365 days a year
Free
Resources, guides, and helpline access — always free
11
Languages — with more on the way. LBD has no borders.

— Who We Are

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.

Our Mission

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.

📢

Our Vision

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.

Everything family needs

Every service we offer is completely free.

The people behind the mission.

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.

— Our Founder

Portrait of a smiling woman with shoulder-length dark hair, wearing a white lace top and pink bead necklace.

Norma Loeb

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.

Jason A. Cohen, MD
⚕ Medical Advisory

Jason A. Cohen, MD

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.

Mary Lou Falcone
★ Board Member

Mary Lou Falcone

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.

Joyce F. Fogel, MD
⚕ Medical Advisory

Joyce F. Fogel, MD

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.

James E. Galvin, MD, MPH
⚕ Medical Advisory

James E. Galvin, MD, MPH

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.

Leon Meytin, MD
⚕ Medical Advisory

Leon Meytin, MD

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.

Elizabeth Nochlin
★ Board Member

Elizabeth Nochlin

Board Member; Banking Enforcement Lawyer

14 years as Assistant District Attorney under Manhattan DA Robert Morgenthau. Cared for her mother who had LBD.

Angela Scicutella, MD, PhD
⚕ Medical Advisory

Angela Scicutella, MD, PhD

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.

Vicki L. Shanker, MD
⚕ Medical Advisory

Vicki L. Shanker, MD

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.

Robin Strongin
★ Board Member

Robin Strongin

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.

Yael Zweig, AGPCNP-BC
⚕ Medical Advisory

Yael Zweig, AGPCNP-BC

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.

Jamie Brickhouse
◆ Advisory Board

Jamie Brickhouse

Author & Performer; CEO, redBrick Agency

Author of "Dangerous When Wet," partly about his mother's LBD journey. Two-time StorySLAM champion at The Moth.

Kenneth Kennard
◆ Advisory Board

Kenneth Kennard

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.

Laura Kramer-Carini
◆ Advisory Board

Laura Kramer-Carini

Retired Educator, NYC Department of Education

30+ years teaching English at NYC's first alternative high school. Her father was diagnosed with LBD.

Norman McNamara
◆ Advisory Board

Norman McNamara

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.

Suzanne Pargament, LMSW
◆ Advisory Board

Suzanne Pargament, LMSW

Social Worker, Townhouse Center for Rehabilitation & Nursing

Master's in Social Work from Adelphi. Oversees the dementia unit. Her father had LBD.

Pamela Rosenblum
◆ Advisory Board

Pamela Rosenblum

Retired Psychoanalyst & Trauma Therapist

38 years of private practice in Manhattan. Cared for her husband Paul who died from LBD in May 2022.

Frantzie Titus
◆ Advisory Board

Frantzie Titus

Social Media Manager, LBDRC

Caregiver for her father from 1999-2009. 15+ years in administration for the Central Administration of Canada.

Jessica Zwerling, MD, MS
◇ Board Emeritus

Jessica Zwerling, MD, MS

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.

Ted Hartley
✦ In Memory

Ted Hartley

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.

Patricia Bosworth
✦ In Memory

Patricia Bosworth

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.

Anne K. Johnson
✦ In Memory

Anne K. Johnson

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.