Programs and results
What we aim to solve
The 50+ leukodystrophies make up a group of rare genetic disorders that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath, which insulates nerve cells. These disorders are progressive, meaning that they tend to worsen throughout the life of the patient. The medical field lacks knowledge and treatment options, and there is not a cure for this disease.
Our programs
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.
Family Assistance
We assist families by providing medical professional recommendations and promoting disease education.
Annual Scientific Syposium
The Scientific Symposium is a meeting for research, medical, and industry professionals. The one-day meeting takes place on the day before the Family Conference and allows physicians, researchers, and more to share projects, discuss ideas, and network in a professional setting.
Annual Family Conference
The ULF Family Conference is an annual event where affected families can access the worlds top leukodystrophy physicians and researchers outside of the restrictions of insurance and the hospital setting. Held over two days, the Conference aims to provide the latest scientific information to keep families informed on advances in the field but also guide families on topics that will improve their overall quality of life while living with a leukodystrophy. The Conference is an invaluable experience geared toward the whole family: Affected individuals, parents and caregivers, spouses, siblings, extended family, friends, and anyone else in their support network.
Support Groups
The United Leukodystrophy Foundation hosts an annual conference to bring families together across all leukodystrophies. It is a great opportunity to learn from others, share your journey and experiences and connect with families and medical professionals who all live in the rare world of leukodystrophy.
We offer and host online Caregiver support groups that meet up monthly. Connect with other caregivers to share knowledge and experiences with each other.
Where we work
External reviews
Our results
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, Caregivers, People with diseases and illnesses, Students
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
Reports and documents
Download strategic planLearn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
The Foundation aims to promote the exchange of information to spread disease awareness and to provide funding for researchers to advance medical treatments.
What are the organization's key strategies for making this happen?
We provide grant funding for researchers annually, and we offer assistance to families who are looking for medical information referrals and support.
We also host an annual Scientific Symposium & Family Conference. The Scientific Symposium is a meeting for research, medical, and industry professionals. The one-day meeting takes place on the day before the Family Conference and allows physicians, researchers, and more to share projects, discuss ideas, and network in a professional setting. The ULF Family Conference is an annual event where affected families can access the worlds top leukodystrophy physicians and researchers outside of the restrictions of insurance and the hospital setting. Held over two days, the Conference aims to provide the latest scientific information to keep families informed on advances in the field but also guide families on topics that will improve their overall quality of life while living with a leukodystrophy. The Conference is an invaluable experience geared toward the whole family: Affected individuals, parents and caregivers, spouses, siblings, extended family, friends, and anyone else in their support network.
What are the organization's capabilities for doing this?
We fundraise to provide the grant funding and work closely with doctors in the medical field to provide relevant information to individuals and families seeking help.
What have they accomplished so far and what's next?
We have successfully fulfilled our mission of awareness promotion for 41 years and will continue to do so for the next 41 years and beyond.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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
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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
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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
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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Connect with nonprofit leaders
SubscribeBuild 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 directorsas of 02/01/2024
Ron Chapleau
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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