PLATINUM2023

UNITED LEUKODYSTROPHY FOUNDATION, INC.

You are not alone!

DeKalb, IL   |  www.ulf.org

Mission

The United Leukodystrophy Foundation serves individuals and families affected by leukodystrophy by exchanging information and promoting progress on research, treatment, and prevention.

Ruling year info

1983

Board of Directors president

Robert Rauner

Executive Director

Chris

Main address

224 N. Second Street Suite 2

DeKalb, IL 60115 USA

Show more contact info

EIN

35-1557361

NTEE code info

Specifically Named Diseases (G80)

Alliance/Advocacy Organizations (F01)

Brain Disorders (H48)

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

Leukodystrophy is a rare neurological disease that primarily affects children. The medical field lacks knowledge and treatment options, and there is not a cure for this disease.

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?

Medical research

Medical research towards advancing treatments for leukodystrophies.

Population(s) Served
Adults

We assist families by providing medical professional recommendations and promoting disease education.

Population(s) Served
Families

We host a scientific meeting for researchers to come and talk about their most recent projects.

Population(s) Served
Adults

The family conference allows families to network among each other as well as interact with doctors in the leukodystrophy field.

Population(s) Served
Families

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 conferences held

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

Families, Researchers

Related Program

Annual Family Conference

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Annually, we host a combined family conference and scientific meetings. Anyone who is affected by leukodystrophy or has a medical professional interest in the field can attend these meetings.

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 Foundation aims to promote the exchange of information to spread disease awareness and to provide funding for researchers to advance medical treatments.

We provide grant funding for researchers annually, and we offer assistance to families who are looking for medical information referrals and support.

We fund raise to provide the grant funding and work closely with doctors in the medical field to provide relevant information to individuals and families seeking help.

We have successfully fulfilled our mission of awareness promotion for 35 years and will continue to do so for the next 35 years and beyond.

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 make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

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

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback

Financials

UNITED LEUKODYSTROPHY FOUNDATION, 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.

UNITED LEUKODYSTROPHY FOUNDATION, INC.

Board of directors
as of 02/23/2023
SOURCE: Self-reported by organization
Board chair

Ron Chapleau

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 ? Not applicable
  • 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? No

Organizational demographics

SOURCE: Self-reported; last updated 1/20/2022
info Candid has made improvements to the race and ethnicity options.

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
Male

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 01/20/2022

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.