Chief Executive Officer

Chief Executive Officer| Phelan-McDermid Syndrome Foundation | Remote, US About Phelan-McDermid Syndrome Foundation The Phelan-McDermid Syndrome Foundation (PMSF) is the leading organization dedicated to transforming the lives of individuals and families affected by Phelan-McDermid syndrome, a rare genetic disorder that impacts brain development, physical health, and daily functioning. Founded by families who understood the urgency and complexity of this diagnosis, PMSF has grown into the most trusted source of support, medical advocacy, and research leadership in the field. Our work is rooted in the belief that every person with Phelan-McDermid syndrome deserves the chance to thrive, and every family deserves the resources, relationships, and breakthroughs that make that possible.Phelan-McDermid syndrome can cause significant developmental delays, absent or limited speech, low muscle tone, seizures, and a range of behavioral and medical challenges. There is currently no cure, and no approved treatments that target the underlying cause, but through PMSF's work, that future is changing. PMSF's mission is delivered through three core pillars: Supporting and connecting families with support programs, resources, and a strong and empathetic community.

Improving medical care by educating medical providers and families to strengthen treatment pathways.

Driving research breakthroughs to accelerate the development of meaningful treatments and, ultimately, a cure. Guided by urgency, compassion, and scientific purpose, PMSF partners with families, researchers, clinicians, and industry to transform today's barriers into tomorrow's breakthroughs. PMSF is building a world where Phelan-McDermid syndrome is no longer a life-altering diagnosis, but a treatable and curable condition. For more information about PMSF, please visit: https://pmsf.org/About the Position The Chief Executive Officer (CEO) will provide visionary leadership and strategic direction to PMSF and serve as the primary ambassador for the organization. The CEO will oversee all aspects of the foundation's operations, including fundraising, program development, community engagement, building partnerships with scientific and medical communities to support research, and patient advocacy. They will play a pivotal role in advancing the foundation's mission to improve the quality of life for individuals affected by Phelan-McDermid Syndrome.Key ResponsibilitiesLeadership and Strategy

In conjunction with the Board of Directors, develop and implement strategic plans to advance PMSF's mission and goals.

Directly oversee and manage multiple staff members who work remotely and ensure the organization has sufficient support to drive PMSF's mission forward.

Provide inspirational leadership to staff, volunteers, and the community.

Ensure that the patient voice is embedded in all strategic and operational work of the PMSF. Operations

Provide strategic guidance to the Chief Operating Officer to ensure effective day-to-day operations, strong organizational alignment, and the successful execution of key initiatives.

Manage and direct PMSF's day-to-day operations, including budgeting, financial management, and human resources.

Work closely with the Board of Directors to ensure effective governance and strategic alignment, providing regular updates on the foundation's progress and challenges and work with staff to support the board in their responsibilities to the organization.

ability Oversee the development and execution of programs and services that support families affected by Phelan-McDermid syndrome, ensuring programs are effective, innovative, aligned with the foundation's mission and family priorities, and properly supported by staff. Fundraising and Development

Provide strategic oversight to the Chief Development Officer and co-lead comprehensive fundraising efforts, including major gifts, corporate sponsorships, grant writing, and special events.

Cultivate, solicit, and maintain relationships with major donors, foundations, and corporate partners.

Develop innovative fundraising strategies to ensure sustainable revenue streams. Scientific and Research

Provide strategic guidance working with the Chief Science Officer to define scientific priorities that reflect the most impactful improvements to the quality life of the Phelan-McDermid syndrome community members.

Partner with the Chief Science Officer as needed to inspire and engage academic institutions, researchers and pharmaceutical companies to advance the understanding and treatment of Phelan-McDermid syndrome.

Facilitate partnerships and collaborations that drive research breakthroughs, clinical trials, and strengthen the expert clinical network. Patient Advocacy & External Relations

Create strategic partnerships with organizations that advocate for policies and initiatives that benefit individuals with Phelan-McDermid syndrome.

Serve as a spokesperson for PMSF, representing the organization at conferences, meetings, and public events, and being an active presence on social media platforms.

strong Foster community engagement among families, researchers, healthcare providers, and other stakeholders, through direct interaction with the members, families and partners.

Increase public awareness of Phelan-McDermid syndrome and the foundation's work through media and outreach efforts.

Work with PMSF's teams, stakeholders and community to ensure diversity and inclusion activities throughout our networks. Key Qualifications

5+ of nonprofit leadership experience, preferably within a patient advocacy group.

Strong fundraising and development skills, with a track record of securing major gifts and grants.

Scientific background or experience working within 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.

Ability to think strategically and develop and implement effective plans, develop strategy, and oversee operational activities.

Passion for the mission of PMSF and a deep understanding of and commitment to improving the lives of individuals with Phelan-McDermid syndrome and their families.

Ability to learn and use internal collaboration software including Google Suite, Asana, Zoom or equivalent and familiarity with the use of fundraising CRMs, constituent communication methods, survey tools, and social media.

Bachelor's degree required, advanced degree a plus. Studies have shown that some candidates, especially women and people from underrepresented backgrounds, are less likely to apply for jobs unless they meet every qualification listed. If you're excited about this role but your experience doesn't align perfectly with every qualification, we still encourage you to apply for the position. All qualified candidates will receive consideration for employment without regard to race, color, religion, sex, national origin, disability, veteran status, or any other characteristic protected by law.Compensation for this position begins at $100,000, commensurate with experience.To express interest, please submit your cover letter and resume in confidence here.For more information, please visit www.developmentguild.com.

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