LUPUS FOUNDATION OF AMERICA, GREATER OHIO CHAPTER, INC

Help Us Solve the Cruel Mystery

aka Lupus Foundation of America, Greater Ohio Chapter, Inc., Serving the state of Ohio   |   Brecksville, OH   |  www.lupusgreaterohio.org

Mission

The Lupus Foundation of America is dedicated to improving the quality of life for all people affected by lupus through programs of research, education, and advocacy.

Notes from the nonprofit

The Covid Crisis brought many obstacles that were unprecedented. This organization rose to the needs and fought for sustainability to strive to serve those who needed our help. Although the financial picture is grim we will remain hopeful that we weather the storm to continue our very vital work in serving Ohions that have lupus.

Ruling year info

1978

President/CEO

Mrs. Suzanne Tierney

VP of Operations, Patient Navigator

Leslie Vizcarra

Main address

12930 Chippewa Rd

Brecksville, OH 44141 USA

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Formerly known as

Ohio Lupus Foundation, Inc

Lupus Foundation of America, Greater Cleveland Chapter

EIN

34-1229407

NTEE code info

Health Support Services (E60)

Alliance/Advocacy Organizations (P01)

Alliance/Advocacy Organizations (H01)

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

The Lupus Foundation of America, Greater Ohio Chapter envisions a world without lupus. We are working to address the advancement of science and medicine of lupus to find a cure and improve the quality of life for all people affected by lupus.

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?

New Patient Education Classes

Provide information and conduct programs to increase awareness and knowledge of the disease for people affected by lupus.

Population(s) Served
Women and girls
Ethnic and racial groups

Improving the quality of life for persons affected by Lupus by providing emotional support for the person and their respective family - an estimated 1,500-2000 persons benefited during the year

Population(s) Served
Women and girls
Ethnic and racial groups

Educational programs presented by physicians and other medical professionals on specific topics pertaining to lupus which include current treatments, diet and nutrition, current research trends and strategies for managing chronic disease.

Population(s) Served
Women and girls
Ethnic and racial groups

Where we work

Affiliations & memberships

Better Business Bureau Wise Giving Alliance - Organization 2011

Our results

SOURCE: Self-reported by organization

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

Hours of support group services offered

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults, Ethnic and racial groups, Health, Children and youth

Related Program

Optimal Health Lupus Support Groups

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

This year we trained over 24 Patient Navigators. They are charged with reaching out to those impacted by lupus. They are a patient and or caregiver. Their role is education, resources, and support.

Number of support groups offered

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health, Age groups, Ethnic and racial groups

Related Program

Optimal Health Lupus Support Groups

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

These groups offer a safe place for people to come together with their peers and share their achievements and their challenges.. Peer to Peer support is vital to their journey.

Number of clients participating in support groups

This metric is no longer tracked.
Totals By Year
Population(s) Served

Age groups, Ethnic and racial groups, Family relationships, Health

Related Program

Optimal Health Lupus Support Groups

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Often after the first visit to the group the patient feels better after sharing with their peers and may go on without the group and will return when hurdles come their way. Many foster relationships.

Number of adults with disabilities receiving sufficient social and emotional support

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health, Family relationships, Ethnic and racial groups, Age groups

Related Program

New Patient Education Classes

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Most lupus patients are living with a chronic disease that also brings along other chronic diseases. Many are on disability and feel alone and isolated. We provide a lupus community .

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.

The Lupus Foundation of America, Greater Ohio Chapter is dedicated to improving the quality of life for all people affected by lupus through programs of research, education and advocacy. The organization will advance the science and medicine of lupus to find a cure and improve the quality of life for all people affected by lupus.

The Lupus Foundation of America, Greater Ohio Chapter focuses on research, advocacy and education. We host annual walks throughout Ohio to raise funds for lupus research, provide multiple monthly support groups and new patient education classes throughout Ohio and hold a variety of events and fundraisers. It is vital that the patient receives the latest and most accurate information about lupus. This mysterious disease is difficult to diagnosis and to treat. Together we strive to constantly ensure that there is an arsenal of clinicians and new treatments to take on the enormous task of treating this cruel disease that impacts mostly women and women of color worst.

The journey with lupus is complex and often lonely and misunderstood. It does not have to be. Together we can have a better quality of life. We are here for education, awareness, support and resources until the cause or cure is found.

Unfortunately we are a grassroots organization that needs much more in the area of support and resources to truly fight the enormous fight. The funding for lupus is minimal compared to other diseases. Lupus does not get the funding that it deserves. We do our best to meet the needs of our constituents but much more needs to be done.

Until the public knows lupus we will struggle in getting to there being NO LUPUS.

We have a small, dedicated and passionate staff that take huge leaps everyday to meet the demands placed upon them. Most have lupus themselves. It is important to them to be here to make a difference.

Here in the state of Ohio we were able to work with the Ohio Department of Health in doing the first ever in the state, The Ohio Lupus Needs Assessment. This project is a road map for the direction needed to be successful at meeting the needs of those who serve the patient as well as the patient.

From this direction we have succeeded at education over 600 clinicians in Ohio about lupus. They earned CME's and CEU's. The goal was to provide a tool kit to be on the look out for lupus and how to best treat it. This project also allowed us to create much needed community partners across the state to help us create awareness about lupus. This year we succeed in educating patients and their families about lupus at our various educational summits across the state.

Our digital footprint has grown into the thousands and our in person direct support is in the hundreds.

Our state and national advocacy efforts are the driving force towards advancements on the treatment and cure of lupus.

We are building a community that cares about lupus and together we support each other so that no one does this journey alone.

Financials

LUPUS FOUNDATION OF AMERICA, GREATER OHIO CHAPTER, 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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  • Analyze a variety of pre-calculated financial metrics
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LUPUS FOUNDATION OF AMERICA, GREATER OHIO CHAPTER, INC

Board of directors
as of 4/9/2021
SOURCE: Self-reported by organization
Board chair

Maria Woyma

Cleveland Clinic

Term: 2013 - 2016

Suzanne Tierney

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 01/07/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

The organization's co-leader identifies as:

Race & ethnicity
Asian American/Pacific Islanders/Asian
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability