irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $131KFISCAL SPONSORSHIPS: PARTNERSHIPS WITH INDIVIDUALS/ENTITIES WITHOUT NOT-FOR-PROFIT STATUS WHO SHARE COMMON GOAL OF RAISING PUBLIC AWARENESS OF LEWY BODY DEMENTIA (LBD).
named programs · 4 · from sources
What they call their work
LBD Caregivers Support Groups
Facilitates in-person and virtual support groups for caregivers of people with Lewy body dementia in the New York Metro area and nationally
LBD Helpline
Telephone and digital support service providing information and referrals to people with LBD and their families
Living with LBD Support Group
National support group led by Norma Loeb for individuals living with Lewy body dementia
Resource and Referral Center
Provides educational materials, medical referrals, and community connections for patients, caregivers, and healthcare providers
activities · 4 groups
What they do
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Caregiver Support for Dementia and Aging 5 activities
- Connect individuals with specialized healthcare professionalsMaintains and shares listings of neurologists, therapists, home health aides, adult day care programs, hospice agencies, and other professionals with expertise in Lewy Body Dementia to support diagnosis and care planning.
- Distribute caregiving and care management resourcesProvides caregivers with practical tools such as tip sheets and resource lists covering behavior management, communication, safety, legal and financial planning, and end-of-life care for individuals with Lewy Body Dementia.
- Facilitate caregiver and patient support groupsFacilitates the only in-person Lewy Body Dementia caregiver support group in the New York Metro area and leads a national support group for people living with LBD, fostering community, emotional support, and shared knowledge.
- Offer therapeutic and recreational activitiesProvides therapeutic and recreational programs designed to improve quality of life for individuals affected by Lewy Body Dementia.
- Provide comprehensive informational resources on Lewy Body DementiaProvides accessible, detailed information about Lewy Body Dementia through its website and helpline, including symptoms, diagnosis, treatment, medications, care strategies, and guidance on medications to avoid.
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Disease-Specific Clinical & Patient Education 3 activities
- Conduct public and professional education outreachDelivers outreach and speaking engagements to educate healthcare professionals and the general public about Lewy Body Dementia, including symptoms, prognosis, and care needs.
- Produce and share educational video contentCreates and distributes a video series featuring personal stories from individuals with Lewy Body Dementia, caregivers, and expert physicians to improve public understanding, promote early diagnosis, and increase awareness.
- Provide access to educational publicationsMakes available the book "Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders" through its website and Amazon to support caregivers and individuals affected by Lewy Body Dementia.
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Alzheimer's Research and Support Services 2 activities
- Advocate for increased research funding and scientific advancesEngages in advocacy efforts to promote increased funding and support for scientific research into Lewy Body Dementia and related neurodegenerative disorders.
- Provide fiscal sponsorship for Lewy Body Dementia awareness initiativesOffers fiscal sponsorship to individuals and organizations working to raise public awareness of Lewy Body Dementia, enabling them to receive tax-deductible donations and operate under the organization's nonprofit status.
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24/7 Crisis and Warmline Support Services 1 activity
- Operate helpline for individuals and families affected by Lewy Body DementiaOperates a live helpline available 12 hours a day, seven days a week, to respond to questions, provide guidance, and connect callers with specialized resources and professionals across all U.S. states.
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financials · form 990 · fy2024
revenue
Total revenue$209K
Contributions & grants$149K71%
Program service revenue$00%
Investment income$5K2%
Other revenue$55K
expenses
Total expenses$226K
Program expenses81%
Admin / overhead14%
Fundraising5%
Salaries & benefits$33K
Grants paid out$132K
Largest expense lineProfessional Fees
balance sheet
Total assets$257K
Cash$247K
Investments$219
Liabilities$47K
Net assets$210K
Liquid reserves13.1 mo
5 years on record · 2020–2024 · YoY revenue -16.0%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| NORMA LOEB | FOUNDER/EXECUTIVE DIRECTOR | 40 | $30K |
board members · 4
- JASON A COHEN MD — DIRECTOR
- JOYCE F FOGEL MD — DIRECTOR
- LEON MEYTIN MD — DIRECTOR
- MARY LOU FALCONE — DIRECTOR
relationships · 25
Who they work with
- Albert Einstein College of Medicine Partner — Dr. Jason A. Cohen, a member of the Medical Advisory Council, is affiliated with the Albert Einstein College of Medicine.
- Alzheimer’s Disease Education and Referral Center Partner — Collaborates by providing caregiving tip sheets and resource lists for individuals with Lewy body dementia.
- Centers for Medicare and Medicaid Services Government — Robin Strongin worked in the Office of Legislation and Policy in the Health Care Financing Administration, now known as the Centers for Medicare and Medicaid Services.
- Facebook Network — Shares content and connects with community via Facebook
- Hartford Healthcare’s Movement Disorders Center Partner — Dr. Leon Meytin, a member of the Medical Advisory Council, is a neurologist at Hartford Healthcare’s Movement Disorders Center in Bridgeport, Connecticut.
- Hofstra-North Shore-LIJ School of Medicine Partner — Dr. Angela Scicutella, a member of the Medical Advisory Council, is a Clinical Associate Professor of Psychiatry at Hofstra-North Shore-LIJ School of Medicine.
- Icahn School of Medicine at Mount Sinai Partner — Dr. Vicki L. Shanker, a member of the Medical Advisory Council, is an Assistant Professor at the Icahn School of Medicine at Mount Sinai.
- Individuals and entities without nonprofit status Partner — Partners with non-501(c)(3) individuals and entities through fiscal sponsorship to promote Lewy Body Dementia awareness.
- Instagram Network — Engages community and shares updates via Instagram
- Institute for Music and Neurologic Function Partner — Robin Strongin served on the board of the Institute for Music and Neurologic Function, founded by Dr. Oliver Sacks.
- International End-of-Life Doula Association Partner — Norma Loeb, Founder and Executive Director, was trained as an End-of-Life Doula through INELDA.
- James E. Galvin, M.D., M.P.H. Partner — Cites research and insights from James E. Galvin on the history and prevalence of Lewy Body Dementia.
- Lewy Body Dementia Association Network — Norma Loeb served on the board of directors of the Lewy Body Dementia Association for three years prior to founding the LBD Resource Center.
- Lewy Body Dementia Association Partner — Collaborates with the Lewy Body Dementia Association to expand access to resources and support for families affected by LBD.
- LinkedIn Network — Shares organizational updates and connects professionally via LinkedIn
- Mayo Clinic Partner — Relies on and references clinical information from the Mayo Clinic regarding Lewy Body Dementia symptoms, diagnosis, and progression.
- Meera Balasubramaniam, M.D. Partner — Cites research and insights from Meera Balasubramaniam on the history and prevalence of Lewy Body Dementia.
- Montefiore Medical Center Partner — Dr. Jason A. Cohen, a member of the Medical Advisory Council, is a neurologist and dementia specialist at Montefiore Medical Center.
- Mount Sinai Beth Israel Partner — Dr. Leon Meytin completed a movement disorders fellowship at Mount Sinai Beth Israel, and Dr. Joyce Fogel provides outpatient care at Mount Sinai Beth Israel Senior Health.
- National Institute on Aging Partner — Collaborates by providing access to the NIH publication "Lewy Body Dementia: Information for Patients, Families, and Professionals."
- Norma Partner — Point of contact for the Helpline, assisting with resource referrals.
- PCORI-funded Alzheimer’s & Dementia Patient/Caregiver-Powered Research Network Network — Robin Strongin was named to the National Alzheimer’s Scientific, Patient and Caregiver Advisory Council of the PCORI-funded Alzheimer’s & Dementia Patient/Caregiver-Powered Research Network.
- SUNY Downstate Medical Center Partner — Dr. Angela Scicutella, a member of the Medical Advisory Council, is a Clinical Associate Professor in Psychiatry at SUNY Downstate Medical Center.
- University of Miami Miller School of Medicine Partner — Dr. James E. Galvin, a member of the Medical Advisory Council, is a Professor of Neurology and Director of the Comprehensive Center for Brain Health at the University of Miami Miller School of Medicine.
- YouTube Network — Shares video content and resources via YouTube channel
strategies · 5
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Comprehensive Caregiver Support Through Information and Resourcesmethodology: caregiver_support_through_informationBy providing non-clinical information, resource directories, and continuous access to support, the organization reduces the practical and emotional burden on caregivers because accessible, tailored guidance increases caregiver resilience and capacity to deliver effective care.
- Education Through Story-Based Narrativesmethodology: story_based_educationBy using firsthand personal and expert stories in educational materials, the organization improves understanding of Lewy Body Dementia symptoms and promotes accurate diagnosis because narrative-based learning increases empathy, retention, and recognition of subtle clinical signs among families and professionals.
- Healthcare System Education to Prevent Misdiagnosismethodology: healthcare_system_educationBy educating healthcare professionals—especially in emergency rooms and long-term care facilities—the organization reduces misdiagnosis and harmful medication use in LBD patients because targeted clinical education improves recognition of disease-specific symptoms and treatment contraindications.
- Peer-Led Support Modelmethodology: peer_led_supportBy leveraging firsthand experience with Lewy Body Dementia, the organization builds a peer-led support network that fosters trust and relatability, increasing engagement and emotional resonance among affected individuals and caregivers because shared lived experience enhances credibility and reduces isolation.
- Person-Centered Care Approachmethodology: person_centered_careBy centering emotional needs, communication, and environmental design in caregiving, the organization improves quality of life for individuals with LBD because a calm, respectful, and autonomy-supporting environment reduces behavioral symptoms and reliance on medication.