United Leukodystrophy Foundation Inc

Learn about this cause: What are the reviews? Is it Legit? Do I like the mission? What is the CEO's salary?

EIN: 351557361 ✦ Dekalb, IL ✦ Designated as a 501(c)(3)

Shop smarter and support your favorite cause at the same time! With the Give Freely browser extension, you'll automatically save money with coupons, and partner stores will donate to your chosen charity - at no extra cost to you. Start giving back with a single click. It's safe, free, and spam-free, guaranteed!

Overview

What is United Leukodystrophy Foundation Inc?

The United Leukodystrophy Foundation Inc., established in 1982, is a 501c3 nonprofit organization based in Dekalb, Illinois. With a mission to support individuals and families impacted by leukodystrophy, the ULF functions as a bridge between patients, medical professionals, and research communities, both domestically and internationally. The organization's primary objectives include accelerating improvements in patient quality of life and advancing towards cures. Some of its notable achievements involve supporting leukodystrophy research, organizing an annual educational symposium and family conference, and providing education and medical referrals to affected individuals and families. Its operations are underpinned by a commitment to promoting progress in research, treatment, and prevention of leukodystrophy.


Official website here: www.ulf.org

What are the reviews and ratings of this charity?

Charity Navigator Rating: 95% (Four-Star out of Four Star Rating)

The United Leukodystrophy Foundation Inc has earned a strong 95% rating from Charity Navigator, indicating a high level of accountability and financial health. With a perfect score for the independence of its board members and a low liabilities-to-assets ratio of 0.94%, the organization demonstrates sound financial practices and governance. The foundation also excels in its program expense ratio, allocating over 69% of its budget to programs, which is a positive aspect for donors seeking impactful organizations.

User feedback on platforms like Great Nonprofits highlights a mix of experiences. Positive reviews praise the foundation's annual conferences as valuable opportunities for families affected by leukodystrophy and for networking with knowledgeable healthcare professionals. This indicates a strong sense of community and support among those impacted by the conditions related to leukodystrophy.

However, there are notable concerns, particularly regarding membership and governance transparency. A significant negative review criticized the organization for poor communication and alleged mismanagement of funds, raising questions about the board's composition and financial practices. This experience points to potential limitations in member engagement and transparency, which the foundation may need to address to foster greater trust and satisfaction among its constituents.


This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.

Is United Leukodystrophy Foundation Inc legitimate?

United Leukodystrophy Foundation Inc is a legitimate nonprofit organization registered as a 501(c)(3) entity. United Leukodystrophy Foundation Inc submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.


Heare are some key statistics you may want to consider:

Executive Compensation: $61,092
Professional Fundraising Fees: $0
Other Salaries and Wages: $110,903

For more financial information, click here


Official website here: www.ulf.org

What is the mission statement of United Leukodystrophy Foundation Inc?

The United Leukodystrophy Foundation's mission is centered around supporting individuals and families affected by leukodystrophy. They accomplish this by facilitating information exchange and advocating for progress in research, treatment, and prevention of the condition. The foundation is dedicated to helping those with leukodystrophy, as well as their family members and supporting professionals, through initiatives in education, advocacy, research, and service. The ULF's commitment is to identify, treat, and ultimately cure all types of leukodystrophies, aiming to improve patient quality of life and find cures. The organization achieves this through various programs, including funding research, hosting educational symposiums, and providing medical referrals and support.


Official website here: www.ulf.org

Who is the CEO of United Leukodystrophy Foundation Inc?

Ron Chapleau is the Executive Director of United Leukodystrophy Foundation Inc.


Official website here: www.ulf.org

What is the revenue of United Leukodystrophy Foundation Inc?

United Leukodystrophy Foundation Inc's revenue in 2022 was $498,897.


Official website here: www.ulf.org

Who are the executives of United Leukodystrophy Foundation Inc and what are their salaries?

The average compensation at United Leukodystrophy Foundation Inc during 2022 was $57,332. There are 3 employees at United Leukodystrophy Foundation Inc.


Here are 15 key members and their salaries:


Christopher Rice (Executive Director)
  • Compensation: $61,092
  • Related: $0
  • Other: $0
Donna Skwirut (Treasurer)
  • Compensation: $0
  • Related: $0
  • Other: $0
Sa Von Rudenick (Secretary)
  • Compensation: $0
  • Related: $0
  • Other: $0
Ron Chapleau (Vice President)
  • Compensation: $0
  • Related: $0
  • Other: $0
John Wolf (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Robert Rauner (President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Joyce Changle (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Kristie Demarco (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Dr Joseph Hacia (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Dr Stephanie Keller (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Marcie Flores (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
John Kaprich (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Margaret Mcintyre (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Shannon Reed (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Marilyn Schmiedel (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0


Official website here: www.ulf.org

Where can I find the form 990 for United Leukodystrophy Foundation Inc?

United Leukodystrophy Foundation Inc's most recent form 990 was submitted in 2022 and can be accessed here.


Official website here: www.ulf.org

Learn more at the official website: www.ulf.org

Mission Statement of United Leukodystrophy Foundation Inc

The United Leukodystrophy Foundation, a nonprofit organization established in 1982, is dedicated to assisting individuals and families impacted by leukodystrophy. Their mission is multifaceted, encompassing the exchange of information and the promotion of advancements in research, treatment, and prevention of this condition. The Foundation is committed to helping children and adults with Leukodystrophy, as well as supporting the family members, professionals, and services that cater to this community.

The United Leukodystrophy Foundation's primary objective is to find a cure for all types of leukodystrophies. To achieve this, they implement programs focused on education, advocacy, research, and service. Through these initiatives, they aim to identify potential treatments, accelerate discoveries, and ultimately eradicate this debilitating disease.

An integral part of their mission is to provide support to the leukodystrophy community. They accomplish this by hosting annual educational scientific symposiums and family conferences, offering a platform for patients, families, and medical professionals to share knowledge and experiences. Additionally, the Foundation offers medical referrals and education to those affected by the disease, aiming to improve their quality of life.

Shop smarter and support your favorite cause with the Give Freely browser extension. Save money with coupons and donate to charity with a single click. Download now!

Impact




July, 2024

The impact of the United Leukodystrophy Foundation Inc is significant in the leukodystrophy community. By supporting research efforts to discover improved therapies and ultimately a cure, the foundation is helping improve the quality of life for patients and families affected by leukodystrophy. The annual educational scientific symposium and family conference organized by the foundation provide a platform for exchanging information and promoting progress in research, treatment, and prevention of leukodystrophy. Additionally, the foundation's dedication to providing education and medical referrals to patients and families affected by the disease contributes to better outcomes and support for those in need. Through its various initiatives and programs, the United Leukodystrophy Foundation is making a difference in the fight against leukodystrophy.




This information is meant to be a general summary of United Leukodystrophy Foundation Inc. Please take the time to review official sources before making any decisions based upon the content provided here.


Financials

This financial information is from Propublica.

Revenue
$498,897 (2022)
Expenses
$557,781 (2022)
Efficiency

Other financial information:

This information is from the most recently submitted tax form from this organization, which was in 2022.

  • Investment Income: -$74,035
  • Gross Receipts: $3,258,760

Assets and Liabilities:

  • Total Assets: $1,456,386
  • Total Liabilities: $9,345
  • Net Assets: $1,447,041

Want to help this charity, for free? You can click here to learn more about Give Freely

Organization Details

Founding Year

1982

Principal Officer

Ron Chapleau

Main Address

224 N SECOND ST, DEKALB, IL, 60115

NTEE Category

Code: G50 - Disease

If you are a representative of United Leukodystrophy Foundation Inc and wish to learn more about how Give Freely can help you raise funds, please click here: https://givefreely.com/nonprofits/. Our services are offered at no cost to your organization.