Opportunities at the ULF

At the United Leukodystrophy Foundation, we are a small team of dedicated professionals who have passion for what we do and love our leukodystrophy community. We epitomize and represent what is defined in our Mission and Vision Statement. As our Foundation continues to grow, so does our reach and ability to better serve the leukodystrophy community around the world.

Available Position(s)

Executive Director of a Rare Disease Nonprofit Organization

The United Leukodystrophy Foundation (ULF) is seeking an Executive Director with strong fundraising experience. The ULF, established in 1982, is a nonprofit 501(c)3 organization with an international reach dedicated to improving the lives of patients and their families who are affected by a leukodystrophy. Leukodystrophies comprise a group of rare genetic nervous system disorders affecting the myelin sheath, which insulates the axon through which nerve impulses are conducted.

The ULF’s mission is to provide support to the leukodystrophy community and enable platforms to accelerate improving patient quality of life and finding cures. Our vision is to meet the needs of patients and families, whether newly diagnosed or living with a leukodystrophy. The Pillars-of-focus for the ULF are Research, Information and Support. The annual ULF Family Conference and Scientific Symposium is the organization’s centerpiece.

The ULF office is in DeKalb, Illinois. However, ULF seeks highly qualified candidates including those who reside outside of the DeKalb area; so remote or hybrid options will be considered. In this case, trips to DeKalb will be expected (frequency to be determined). The Executive Director (ED) is also expected to attend the annual ULF Family Conference and Scientific Symposium in the Chicago area in-person each June and at least one other relevant conference each year.  

The ULF Board of Directors serves the governance role, and evaluates the performance of the ED. Additionally, the ED and Board President will have regular (virtual) meetings. Two full time staff members (who reside in the DeKalb area) report to the ED.

We are seeking candidates with strong nonprofit fundraising and leadership experience who have a passion for helping those who have been impacted by a rare disease. Preferred experience includes: experience developing and executing a fundraising plan to raise over $500,000 annually from a variety of sources; experience being an Executive Director of a small nonprofit organization, and; prior work relationships with key members of the rare disease community. The ULF’s 5-year average revenue is: $580,000. The Executive Director’s 2024 fundraising goal will be set $100,000 above the 2023 projected-results. See below for a complete detailed list of the required and preferred experience for this position.

Summary of Terms:

  • Regular Full Time Exempt
  • Compensation range (annual): $80,000-$90,000; depending on experience. 
  • Travel is expected (see above for details). Work schedule may include evening meetings.
  • Remote-optional (see above for details).
  • Pet-friendly office.
  • Benefits include, but may not be limited to:
  • Paid time off (amount can be negotiated).
  • $300 monthly health insurance stipend (taxable income).



  • Bachelor’s degree from an accredited college or university;
  • At least three years of experience in a position such as Development Officer (or higher) executing (or co-executing) a nonprofit fundraising plan to raise over $350,000 annually from a variety of sources (i.e., grants, major donors, corporate sponsors, conference sponsorships, individual donors, planned giving, events, etc.);
  • Demonstrated leadership and management experience;
  • Experience using: a CRM platform (such as Bloomerang), Google Cloud Suite, and Microsoft 365 apps (Word, Excel, Outlook…);
  • Experience reading financial statements and organizational budgets;
  • Excellent collaboration and communications skills;
  • Demonstrated ability to perform the job tasks described in the Responsibilities and Duties section of the job description and Travel requirements (see details elsewhere in the description);
  • Be legally authorized to work in the U.S.


  • Holds a Certified Fundraising Executive (CFRE) credential;
  • At least four years of experience in a position such as Development Director developing a nonprofit fundraising plan and leading and executing it to raise over $500,000 annually from a variety of sources (i.e., grants, major donors, corporate sponsors, conference sponsorships, individual donors, planned giving, events, etc.); 
  • An intermediate (or above) level of experience with the Bloomerang CRM platform, Google Cloud Suite, and Microsoft 365 apps (Word, Excel, Outlook…);
  • At least two years of experience being an Executive Director of a small nonprofit organization (4 or fewer employees);
  • Has prior work relationships with key members of the rare disease community (i.e., doctors, patients, advocates, businesses);
  • Experience obtaining corporate sponsorships for a conference;
  • Experience developing an Annual Communications and Social Networking Plan for a nonprofit organization;
  • Prior experience with (or training in) nonprofit best-practices; 
  • Prior experience with DEI initiatives and performing outreach to diverse communities;
  • Demonstrated experience directing volunteers;
  • Experience giving annual performance evaluations of staff members;
  • Demonstrated experience as a team collaborator; 
  • Demonstrated organizational skills (such as project management certification).


To be considered as an applicant:

  • Email Resume and Cover letter and names and contact information of three professional references to careers@ulf.org
  • In the Cover Letter, please summarize how you meet the ‘Specific Qualifications and Skills’ for this position.
  • Kindly include the following sentence in your Cover Letter: “I have read the full list of Responsibilities and Duties for this position.”
  • Please make the subject of the email message: Executive Director Application
  • Learn about the United Leukodystrophy Foundation at ULF.org
  • Applications will begin to be considered on June 5th, 2023. 



  • Motivates, mentors and supervises all direct-reports to work toward the mission and vision of the organization. Responsible for recruiting, hiring, managing and discharge of employees. Gives annual performance evaluations of ULF staff members. 
  • Assesses, develops and submits the Personnel Organization Plan for board approval, as needed. Is responsible for the development and maintenance of personnel policies and practices. 
  • Prepares and submits the Annual ULF Budget (including revenues, expenses and possible capital expenditures) for board approval, at or before the November Board Meeting.  
  • Supervises the ULF business affairs ensuring alignment with sound fiscal practices and board policy. Acts as the staff member responsible for appropriate allocation of resources.
  • Exhibits strong financial accountability; including, but not limited to, presenting periodic financial statements to the board, observing appropriate financial controls and ensuring staff-level finance policies and procedures are up-to-date. Sits on the standing Finance Committee.
  • Ensures compliance with non-profit law and best-practices, including, but not limited to filing annual tax documents, maintenance of good-standing with secretary of state agencies, maintenance of Directors and Officers insurance, obtaining a periodic financial review or audit, ensuring organization’s HIPAA compliance (Note: In some cases, the Executive Director may oversee the work of employees or contractors who assist with these duties).

Development and Fundraising

  • Create, lead, and execute an annual Development and Fundraising Plan to generate the revenue that is required by the annual operating budget and to meet and exceed Development and Fundraising goals. The annual Development and Fundraising Plan will generate and sustain revenue through a variety of development activities, including but not limited to: individual and corporate donations, grants, sponsorships, major gifts, events, planned giving, matching gifts and relevant earned income. Unveil the annual Development and Fundraising Plan at or prior to the December Board Meeting.
  • Determine how to best engage members of the volunteer fundraising committee for the purposes of leveraging their skills, networks and other resources in support of the Development and Fundraising Plan. Determines which committee ideas may be enacted in support of the Development and Fundraising Plan. Work with the Board President to ensure 100% Board giving.
  • Is responsible for meeting the annual Development and Fundraising goals. Note: the ULF’s 5-year average revenue is: $580,000. The Executive Director’s 2024 fundraising goal will be set $100,000 above the 2023 projected-results. The Executive Director will be expected in 2024 to increase revenue in two of ULF’s highest earning campaigns (Conference Sponsorships and the Annual Appeal) and develop and increase revenue in ULF’s areas-of-opportunity (such as grants, matching gifts and planned giving).
  • Utilize the Bloomerang database to maintain and expand donation opportunities. Ensure that appropriate donor acknowledgements are sent, and that fundraising efforts are documented in the database (conducted with the assistance of ULF staff members). Create and oversee donor communications. 

Operations and Technology

  • Oversees the work to ensure appropriate compliance activities, insurance, equipment, web and IT services are secured and in place, as needed. Oversees ULF employees responsible for account set-up, troubleshooting and ordering. Oversees work to ensure best-practices are in place for security of records (digital and physical). 
  • Oversees the work to ensure that ULF Standard Operating Procedures are in place and functioning and that office processes and records are kept appropriately. Ensures ULF property is well-kept and functioning. Oversees ULF employees responsible for these areas.
  • Leads or launches operations projects, such as reviewing and standardizing digital platform access, reorganizing the staff and board document repositories, and development of performance review procedures.

Marketing and Communications

  • Develop an Annual Communications and Social Networking Plan to increase the number of ULF constituents, build awareness of programs, support the Development and Fundraising Plan, advance brand identity, and meet and exceed Annual Conference goals.  The plan will be implemented by the ED and assigned staff members.
  • Is accountable for utilizing ULF outreach mechanisms for the successful engagement of the Annual Communications and Social Networking Plan, including but not limited to the ULF Website, Social Media Platforms and Newsletter.
  • Oversees ULF staff member who is responsible for writing, updating, editing, and overseeing production and design of outreach materials (both digital and printed). Oversees ULF staff members who are responsible for executing email communications, including e-newsletters, campaign messages and fundraising acknowledgments. Oversees ULF staff members who are responsible for web content including posts, content and structure. Reviews communications and works together with ULF staff members to ensure these activities support goals and plans.
  • Oversees the periodic collection of relevant metrics and analytics (such as digital engagement) for the purpose of setting and reaching social media and web site goals.
  • Goal for the ED’s first 12 months: Develop a plan to improve the ULF Web site’s clarity, presentation, readability, functionality and navigation.


  • Conference and Symposium: Oversees, and works in partnership with, the ULF staff member who is responsible for enacting a successful Annual Conference and Scientific Symposium.
  • Conference and Symposium: Sets Annual Conference and Scientific Symposium goals in consultation with the ULF staff member responsible for the conference and the volunteer conference committee. Goal measurements include, but are not limited to, number of conference attendees, number of Patient Advocacy Groups represented, conference planning deadline dates, and revenue generated by conference auctions.
  • Patient Advocacy Groups and Patient Support: Oversees and sets annual goals with the ULF staff member who is responsible for the success of partnerships, general patient support and patient support groups. May receive and obtain advice from volunteer committees that work in these areas.
  • Other Programs: Oversees, and sets annual goals with, the ULF staff member who is responsible for success of additional ULF programs (including but not limited to, Ambassador Program, Young Investigators, Newly Diagnosed, Medical Research Sharing, Connecting Community with Clinical Trials, Navigating Resources and ULF Webinars).
  • Before launching new programming projects, ED will ensure that costs of these programming opportunities (including time required and funding needed) align with the available resources of the organization. Before launching new programming projects, ED will ensure programming is in line with the Strategic Plan and can meet SMART goals (Specific, Measurable, Achievable, Relevant to mission, and Time-Bound).

Board and Strategic Plan

  • Attends monthly Board meetings; Submits monthly and special reports, as needed, to the board. Carries out board-authorized policies.
  • Assists the Board president with preparing the ULF Annual Report. Work with the Board President to assist in recruiting and onboarding new directors and to set up board training as needed.
  • Works with the Board on the development of the periodic Strategic Plan (a shared Board -Executive Director responsibility). Assists the Board with defining ‘what success will look like’; acts as the main Subject Matter Expert for ‘how to achieve success,’ and ‘what resources will be needed.’ Implements the Strategic Plan ratified by the Board.
  • Assists with and facilitates board-level tasks. This includes, but is not limited to, developing a draft budget for board review and approval, ensuring the Treasurer creates and shares relevant financial documents, and working with relevant board committees.
  • Provides updates and reports to the Board to keep board members aware of progress toward organizational goals. Regularly review and advise the Board on the risks faced by the organization. Provide the board with relevant materials before board meetings (some of which are assembled by staff members).
  • Supports guiding the board towards a true governance role. Helps to determine which issues the board will address and to assemble the information that shapes this discussion. Helps the board stay focused on the larger governance matters.

DEI, Community Relations and Volunteers

  • Model the values of diversity, equity and inclusion.
  • Work with the Board and other stakeholders to build the values of diversity, equity, and inclusion into the organization’s operations and programming. This may include developing and enacting updated DEI policies, processes and outreach initiatives in conjunction with the Board. 
  • Represent the organization externally with donors, participants, media etc.
  • Ensure organization’s membership status with partner organizations is up-to-date.
  • Maintain and develop existing and new partnerships with relevant public, private, voluntary, and community sector organizations.
  • Solicits ideas and assistance from committee members (volunteers). Leverages the skills and abilities of committee members. Committees, (per by laws) give advice and make non-binding recommendations. As the staff member in charge of resource allocation, makes the final determination on the possibility of enacting committee suggestions.

In compliance with federal law, the person hired will be required to verify identity and eligibility to work in the United States and to complete the required employment eligibility verification form upon hire. The ULF is an equal opportunity employer and makes employment decisions on the basis of qualifications. Submission of your application is not an offer of employment or an employment contract.


Nondiscrimination Policy – Employment

The United Leukodystrophy Foundation is an Equal Opportunity employer.

ULF provides equal employment opportunities to all employees and applicants for employment without regard to race, color, creed, ancestry, national origin, citizenship, sex or gender (including pregnancy, childbirth, and pregnancy-related conditions), gender identity or expression (including transgender status), sexual orientation, marital status, religion, age, disability,  genetic information, service in the military, order of protection status, or any other characteristic protected by applicable federal, state, or local laws and ordinances. Equal employment opportunity applies to all terms and conditions of employment, including hiring, placement, promotion, termination, layoff, recall, transfer, leave of absence, compensation, and training.