Job Description

Job Title: Chief Executive Officer (CEO)

Location: Remote position

Organization: Phelan-McDermid Syndrome Foundation (PMSF) pmsf.org 

About PMSF: The Phelan-McDermid Syndrome Foundation is the largest and most trusted nonprofit organization dedicated to supporting families affected by Phelan-McDermid Syndrome (PMS) and advancing research for treatments and cures. PMS is a rare genetic disorder that impacts many critical functions, including learning, communication, and physical functions.

Position Summary: The CEO will provide visionary leadership and strategic direction to PMSF, ensuring the organization achieves its mission of making today better and the future brighter for individuals living with PMS. The CEO will oversee all aspects of the foundation's operations, including fundraising, program development, community engagement, and advocacy. 

Key Responsibilities:

• Leadership and Strategy: Develop and implement strategic plans to advance the foundation's mission and goals, in conjunction with the Board of Directors. 
• Directly oversee and manage multiple staff members who work remotely and ensure the organization has sufficient support to drive our mission forward. Provide inspirational leadership to staff, volunteers, and the community.
• Fundraising and Development: Provide strategic oversight to the Director of Development and co-lead comprehensive fundraising efforts, including major gifts, corporate sponsorships, grant writing, and special events. Cultivate and maintain relationships with major donors, foundations, and corporate partners. Develop innovative fundraising strategies to ensure sustainable revenue streams.
• Strengthen Scientific and Research Collaboration: Partner with the CSO, as needed to support academic institutions, researchers and pharmaceutical companies to advance the understanding and treatment of PMS. Facilitate partnerships and collaborations that drive research breakthroughs, clinical trials and strengthen the expert clinical network. 
• Program Management: Oversee the development and execution of programs and services that support families affected by PMS. Ensure programs are effective, innovative, aligned with the foundation's mission and properly supported by staff.

• Community Engagement: Foster a strong sense of community among families, researchers, healthcare providers, and other stakeholders, through direct interaction with the members, families and partners. Represent PMSF at conferences, meetings, and public events. Be active and present on social media platforms.
• Advocacy and Awareness: Advocate for policies and initiatives that benefit individuals with PMS. Increase public awareness of PMS and the foundation's work through media and outreach efforts.

• Operational Oversight: Manage and direct the foundation's day-to-day operations, including budgeting, financial management, and human resources. Ensure compliance with all legal and regulatory requirements.
• Collaborate: Work with our teams, stakeholders and community to ensure diversity and inclusion activities throughout our networks. Be an advocate who can equip and educate to create an inclusive environment for our community and employees.
• Board Relations: Work closely with the Board of Directors to ensure effective governance and strategic alignment. Provide regular updates on the foundation's progress and challenges and support and/or work with staff to support the board, in their responsibilities to the organization.

Qualifications:

• Proven experience in a senior leadership role within a nonprofit organization, preferably leading foundations
• Strong fundraising and development skills, with a track record of securing major gifts and grants
• Scientific background or experience working in a research-focused organization, preferably related to genetics or rare diseases
• Experience collaborating with academic institutions, researchers, and pharmaceutical companies
• Experience working with a Board of Directors to ensure effective governance and strategic alignment
• Excellent communication and interpersonal skills, with the ability to inspire and engage diverse stakeholders
• Strategic thinker with the ability to develop and implement effective plans
• Proven experience in strategy development and oversight of operational activities
• Passion for the mission of PMSF and a deep commitment to improving the lives of individuals with PMS and their families
• Bachelor's degree required; advanced degree preferred
• Must be able to use (learn) internal collaboration software including Google Suite, Asana, Zoom or equivalent. Must have familiarity with the use of fundraising, CRM, graphics, mass email, survey and social media technology.

Compensation: Competitive salary ($100-$130K) and benefits allotment commensurate with experience.

Application Process: Interested candidates should submit a resume and cover letter.

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