Executive Director

About the Myhre Syndrome Foundation

The Myhre Syndrome Foundation is a nonprofit organization dedicated to supporting individuals and families affected by Myhre syndrome worldwide. We aim to raise awareness, advance research, and foster a strong, supportive community for those impacted by this rare genetic condition.

Position Overview

The Executive Director (ED) serves as the chief executive officer of the Myhre Syndrome Foundation and is responsible for the overall leadership, strategic direction, and operational management of the organization. The ED will work closely with the Board of Directors, staff, volunteers, and key stakeholders to advance the Foundation’s mission and ensure its sustainability and growth.

Key Responsibilities

Leadership & Strategic Vision

• Develop and implement a strategic plan in collaboration with the Board of Directors.
• Provide visionary leadership to guide the organization’s growth and impact.
• Represent the Foundation at public events, conferences, and stakeholder meetings.

Fundraising & Financial Management

• Develop and execute a comprehensive fundraising strategy, including grants, corporate partnerships, and donor engagement, in partnership with the CSO and board of directors.
• Oversee the financial health of the organization, including budgeting, financial reporting, and compliance with nonprofit regulations.
• Work with the Board to secure funding and steward donor relationships.

Program Development & Community Engagement

• Oversee programs and initiatives that support individuals and families affected by Myhre syndrome.
• Develop partnerships with researchers, clinicians, and advocacy groups to further the Foundation’s mission.
• Foster a sense of community by engaging with patients, families, and stakeholders.

Marketing, Communications & Advocacy

• Develop and implement a communications strategy to raise awareness of Myhre syndrome and the Foundation’s work.
• Oversee the Foundation’s social media, website, and public relations efforts.
• Advocate for policies and initiatives that support the Myhre syndrome community.

Operational & Board Management

• Oversee day-to-day operations, project management, and ensure efficiency and effectiveness.
• Provide leadership and support to staff and volunteers.
• Work collaboratively with the Board of Directors, providing regular updates and strategic recommendations.
• Other duties as required.

Qualifications & Experience

• Bachelor’s degree required; advanced degree in nonprofit management, business administration, public health, or a related field preferred.
• Minimum of 5 years of leadership experience in a nonprofit organization, healthcare, advocacy, or a related field.
• Proven track record in fundraising, donor relations, and financial management.
• Experience in program development, community engagement, and nonprofit governance.
• Strong communication, public speaking, and interpersonal skills.
• Passion for rare disease advocacy and supporting individuals with Myhre syndrome.
• Ability to work independently in a remote environment while managing multiple priorities.
• Domestic and/or international travel (twice a year) and occasional weekend video calls are required.

Compensation & Benefits

• Salary range: $60,000-$70,000
• Flexible remote work environment.
• Opportunities for professional development and networking within the rare disease and nonprofit sectors.

How to Apply

Interested candidates should submit a resume, cover letter, and references to zburns@myhresyndrome.org

Applications will be reviewed on a rolling basis.

The Myhre Syndrome Foundation is an equal opportunity employer. We welcome candidates of diverse backgrounds to apply.