PLATINUM2024

Lewy Body Dementia Resource Center of New York Inc

Bringing Awareness, Supporting with Love

aka Lewy Body Dementia Resource Center   |   LONG BEACH, NY   |  www.lewybodyresourcecenter.org

Mission

Raise crucially needed awareness of Lewy Body Dementia through the dissemination of information to health care professionals and the general public. Offer loving support and services to people with LBD and their care partners. Promote essential scientific advances and research.

Ruling year info

2016

Founder & Executive Director

Ms. Norma Loeb

Main address

750 W BROADWAY Suite 2R

LONG BEACH, NY 11561 USA

Show more contact info

EIN

81-1458076

NTEE code info

Alliance/Advocacy Organizations (P01)

Brain Disorders (G48)

Senior Centers/Services (P81)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Lewy Body Dementia (LBD) is the second most common form of progressive dementia after Alzheimer's disease. It is by no means rare but is widely unknown and misdiagnosed as Alzheimer's disease, Parkinson's disease or a psychiatric disorder. Though there is no cure for any of these disease, it is extremely important to be diagnosed correctly with LBD because people with Lewy Body Dementia are extremely sensitive to medications. The wrong drugs can not only worsen or add symptoms, but can also be life threatening.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Online Resources

We are the only Resource Center in the country for Lewy Body Dementia and offer a comprehensive website that not only gives all information about LBD but also offers resources of physicians, physical therapists, brain donations, eldercare consultants, counselors and much more. In addition, we have a very large Caregiving section that encompasses all aspects of care.

Population(s) Served
Caregivers
People with diseases and illnesses

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of groups brought together in a coalition/alliance/partnership

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Average number of days taken to respond to customers

This metric is no longer tracked.
Totals By Year
Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our mission to to bring awareness of Lewy Body Dementia to health care professionals and the general public so that early diagnosis can be made, misdiagnosis can be avoided, and wrong medications are not given. The second part of our mission is to help family members who are caring for a person with LBD in every way we can. LBD is a complicated disease with a multitude of symptoms and caregivers have no place else to turn for resources and live help.

Bringing crucial awareness requires us to:
1. Have speaking engagements at health care facilities, senior centers, medical schools, home health care agencies
2. Provide information on our website
3. Use social media
4. Have support groups
5. Have a help line
6. Connect with other dementia and Parkinson's organizations

1. We are able to speak wherever we are requested. On our own, we have volunteers who regularly set up speaking engagements at the many hospitals and health care facilities, home health care agencies, etc. who are welcoming us to speak.
2. We have a comprehensive website that provides information on every aspect of the disease in addition to information on caregiving and alternative therapies for anyone with any disease.
3. We have social media accounts and are posting on Facebook, Instagram and Twitter on a regular basis.
4. We have four different monthly supports.
5. We have the only live helpline in the United States for families of people with LBD. It is available 7 days per week, 12 hours per day.
6. We regularly meet with representatives of other organizations that serve people with brain diseases and movement disorders.

Our number of speaking engagements has increased steadily and we intend to add additional ones each month.
2. Our web developer has kept track of traffic to our website and has seen an increase from the previous year. We will be adding more content and having our Newsletters and social media direct more traffic to our site.
3. Our followers and friends on social media have increased on a regular basis and are easy to track on the individual platforms. Our intention is to post more often and to have the link to our website posted on other like-minded facebook pages.
4. The attendance at our support groups has increased. We now intend to announce/advertise their existence in their respective locations to have even more attendees.
5. Calls on our live helpline continue to increase. We already have other experienced LBD caregivers ready to step in and take calls if the need arises.
6. More people are now contacting us to meet with them. Collaborating with some of these organizations is our next step.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To inform the development of new programs/projects, To strengthen relationships with the people we serve

  • Which of the following feedback practices does your organization routinely carry out?

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

Lewy Body Dementia Resource Center of New York Inc
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Lewy Body Dementia Resource Center of New York Inc

Board of directors
as of 01/18/2024
SOURCE: Self-reported by organization
Board chair

Ms. Mary Lou Falcone

M. L. Falcone Public Relations

Term: 2021 -

Vicki Shanker, MD

Beth Israel Mount Sinai

Joyce Fogel, MD

Beth Israel Mount Inai

Jessica Zwerling, MD

Montefiore Medical Center

Angela Scicutella, MD, PhD

Yael Zweig

NYU Langone Medical Center

Ted Hartley

RKO

Elizabeth Nochlin

Barbara Vogel

Northwell

Leon Meytin, MD

Hartford Health

James Galvin

University of Miami

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 1/18/2024

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Disability status
Person with a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 02/17/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Policies and processes
  • We have community representation at the board level, either on the board itself or through a community advisory board.