Human Services

Lewy Body Dementia Resource Center of New York Inc

Bringing Awareness, Supporting with Love

aka Lewy Body Dementia Resource Center

LONG BEACH, NY

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

2016

Founder & Executive Director

Ms. Norma Loeb

Main Address

750 W BROADWAY Suite 2R

LONG BEACH, NY 11561 USA

Keywords

advocacy, education, resources, Lewy Body Dementia, Parkinson's, dementia, hallucinations, REM sleep disorder

EIN

81-1458076

 Number

3618404865

Cause Area (NTEE Code)

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.

Social Media

Programs + Results

What we aim to solve New!

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

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

SOURCE: Self-reported by organization

Online Resources

Where we workNew!

Charting Impact

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SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have and haven't they accomplished so far?

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.

1. We are keeping logs of all speaking engagements, which have been increasing steadily. 2. Our web developer is keeping track of the traffic to our website. 3. Our followers and friends on social media have increased on a regular basis and are easy to track on the individual platforms. 4. The attendance at our support groups has increased and we keep a list of those in attendance. 5. We keep a log of all phone calls to our live helpline. Calls have continued to increase. 6. More people are now contacting us to meet with them, instead of vice versa, so we know we are making progress is being known.

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.

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Board Leadership Practices

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SOURCE: Self-reported by organization

BOARD ORIENTATION & 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?

Not Applicable

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Not Applicable

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Not Applicable

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

Not Applicable

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?

Not Applicable