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Executive Director of a Rare Disease Nonprofit Organization (Remote)

Executive Director of a Rare Disease Nonprofit Organization (Remote)

The United Leukodystrophy Foundation (ULF) is seeking an Executive Director with strong fundraising experience. 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. 

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.  

Please see the full version of this job posting (including the list of Responsibilities and Duties) located at this web page: https://ulf.org/career-opportunities/ 

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).

SPECIFIC QUALIFICATIONS AND SKILLS

Required

    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 in the full description here: https://ulf.org/career-opportunities/);

    Be legally authorized to work in the U.S.

Preferred

    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).

HOW TO APPLY

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. 

    Please review the full list of Responsibilities and Duties located at this web page https://ulf.org/career-opportunities/  Kindly include the following sentence in the 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 6th, 2023.

 

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.

 

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