Disease, Disorders, Medical Disciplines

Lupus and Allied Diseases Association, Inc.

We are small but mighty and march among giants!

Verona, NY   |  https://www.LADAinc.org

Mission

The mission of the Lupus and Allied Diseases Association, Inc. is to advocate for those affected by lupus and allied diseases through awareness and research program initiatives to improve quality of life.

Ruling year info

1980

President & CEO

Ms. Kathleen A Arntsen

Main address

P.O. Box 170

Verona, NY 13478 USA

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Formerly known as

Lupus Foundation of Mid and Northern New York

Lupus Foundation of America, Marguerite Curri Chapter

EIN

16-1083229

Cause area (NTEE code) info

Alliance/Advocacy Organizations (G01)

Nerve, Muscle and Bone Diseases (G50)

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

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

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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?

Hope is on the Horizon, Clinical Trial Participation Initiative

Interactive educational program giving an overview of clinical research trials and their importance in furthering research and development for diseases of unmet need.

Population(s) Served
Adults
Families
Budget
$100,000

An interactive presentation designed to empower people to become proactive in their health care and become engaged in the public policy process and research.

Population(s) Served
General/Unspecified
Budget
$85,000

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 meetings with policymakers or candidates

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

General/Unspecified

Related Program

The Power of Advocacy: Promoting Participation to Improve Care and Advance Research

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Number of meetings or briefings held with policymakers or candidates

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

General/Unspecified

Related Program

The Power of Advocacy: Promoting Participation to Improve Care and Advance Research

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Number of new champions or stakeholders recruited

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

General/Unspecified

Related Program

The Power of Advocacy: Promoting Participation to Improve Care and Advance Research

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Number of invitations for advocates to speak as experts

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

General/Unspecified

Related Program

Hope is on the Horizon, Clinical Trial Participation Initiative

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Number of individuals attending coalition meetings

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

Output - describing our activities and reach

Direction of Success

Increasing

Number of policy guidelines or proposals developed

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

Output - describing our activities and reach

Direction of Success

Increasing

Number of stakeholders/stakeholder groups with whom communication has been achieved and expectations shared

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

General/Unspecified

Related Program

Hope is on the Horizon, Clinical Trial Participation Initiative

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of organizations signing onto policy guidelines or proposals

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

General/Unspecified

Related Program

The Power of Advocacy: Promoting Participation to Improve Care and Advance Research

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Number of government officials who publicly support the advocacy effort

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

General/Unspecified

Related Program

The Power of Advocacy: Promoting Participation to Improve Care and Advance Research

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Charting impact

SOURCE: Self-reported by organization

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

What is the organization aiming to accomplish?

(a) to coordinate and support research and education in the field of lupus and allied diseases with the goal of establishing more effective treatments that are accessible to those suffering from lupus and allied diseases.<br/>(b) to promote the exchange of knowledge about lupus and allied diseases concerning the symptomology, diagnostic methods, treatments, prevention, pathogenesis and cure.<br/>(c) to collaborate with various health organizations such as patient advocacy organizations, professional societies, government entities, and other interested stakeholders in the promotion of lupus and allied diseases program initiatives.<br/>(d) to support biomedical research programs for lupus and allied diseases.<br/>(e) to raise, disburse and administer funds in order to accomplish the aforementioned purposes.

The Lupus and Allied Diseases Association, Inc., believes it is critical for all healthcare stakeholders to collaborate on advocacy and research initiatives. We are very active on both the state and national level regarding health care reform and access issues that impact those affected by lupus including: the biosimilars regulatory process, protecting entitlement programs, providing stronger patient protections, promoting patient-centric research. Our programs are designed to empower individuals to actively participate in their own health care and to also become engaged in the public policy process in order to influence positive change and enhance their quality of life. Lupus and Allied Diseases Association, Inc. provides Public Education, Advocacy and Awareness programs, collaborates with other interested partners to serve the needs of the lupus and unmet disease communities, and provides representation regarding important lupus-related issues at local and national advocacy events.

Lupus and Allied Diseases Association, Inc. addresses access to care issues as they arise, often taking the lead to organize grassroots efforts within the state or nation. We are a prime advocacy group in NYS and have helped to coalesce over 75 patient and professional groups to unite on these important matters. We have also supported access issues in various states and have led and collaborated on national initiatives. We submitted comments on the 21st Century Cures and Senate Healthier Americans Initiative and led the effort for the lupus community to collaborate on the FDA Patient-Focused Drug Development Initiative. We remain committed to ensuring the Biosimilars regulatory pathway recognizes the complexities of autoimmune patients and products are safe, efficacious and have distinguishable non-proprietary names.

By the number of laws passed that we advocated for and supported.<br/>By the increase in lupus research grants, programs and breakthroughs.<br/>Through the implementation of the NIH Future Directions of Lupus Research and the CDC Public Health Agenda for Lupus initiatives.<br/>By the FDA using the Benefit-Risk Framework developed from the Lupus Patient-Focused Drug Development Initiative to advance new therapies.

We have supported $864,000.00 in 19 years in lupus research funding. We have helped to pass legislation that increases lupus and other disease research funding. We have helped to pass legislation that improves patient access to medical care and critical treatments both federally and in various states. We have helped to increase lupus awareness through the CDC Public Health Agenda and the Annual NYS Lupus Awareness Event. We co-lead an Externally-led Lupus Patient-Focused Drug Development (PFDD) Initiative.

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is the organization collecting feedback?

    We regularly collect feedback through: electronic surveys (by email, tablet, etc.), paper surveys, constituent (client or resident, etc.) advisory committees.

  • How is the organization using feedback?

    We use feedback to: to inform the development of new programs/projects, to strengthen relationships with the people we serve.

  • With whom is the organization sharing feedback?

    We share feedback with: our board, our community partners.

  • What challenges does the organization face when collecting feedback?

    It is difficult to: we don’t have the right technology to collect and aggregate feedback efficiently, it is difficult to find the ongoing funding to support feedback collection, staff find it hard to prioritize feedback collection and review due to lack of time.

  • What significant change resulted from feedback

    We started including more diverse speakers in our education programs.

Financials

Lupus and Allied Diseases Association, 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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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.

Lupus and Allied Diseases Association, Inc.

Board of directors
as of 8/31/2020
SOURCE: Self-reported by organization
Board chair

David Arntsen

Sandra Frear

Retired

Kathleen Arntsen

Retired

Philip Teague

Teague Accounting Experts

David Arntsen

Educational Consultant

Jacqueline Taylor

Lutheran Homes

Jane Porter

Retired

Lisabeth Iglesias

Retired

Samantha Darwak

Cullari Communications

Nancy Hopkins

Retired

Estela Carcamo

HealthCare Partners, Optum

Juana Mata

DCFS

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 08/31/2020

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
Sexual orientation
Decline to state
Disability status
Person with a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

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

Equity strategies

Last updated: 08/31/2020

Policies and practices developed in partnership with Equity in the Center, a project that works to shift mindsets, practices, and systems within the social sector to increase racial equity. Learn more

Data
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.

Keywords

lupus, patient-led, all-volunteer, advocacy, autoimmune, sle, research, education, awareness, empowerment, patient-focused, access