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The Phelan-McDermid Syndrome Foundation is seeking a visionary and mission-driven Chief Executive Officer to lead with purpose, ignite innovation, and provide strategic direction to support individuals and families affected by Phelan-McDermid syndrome and accelerate the path toward a cure.
Link to Job Description: https://www.developmentguild.com/current-searches/chief-executive-officer-phelan-mcdermid-syndrome-foundation/
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 familieswith 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 Responsibilities- Strategic Leadership: Develop and implement the Foundation’s scientific and research strategy, ensuring alignment with our mission and goals.
- Research Oversight: Oversee the design, implementation, and evaluation of research programs, including informing the patient community, research application review, and collaborative projects with academic and industry partners.
- Funding and Grants: Identify funding opportunities, prepare grant proposals, and manage relationships with funding agencies and donors.
- Scientific Advisory Board: Lead and collaborate with the Scientific Advisory Board, leveraging their expertise to guide research priorities and initiatives.
- Community Engagement: Foster relationships with researchers, clinicians, patients, and families to ensure that our research initiatives are patient-centered and address community needs.
- Communication: Serve as the primary scientific spokesperson for the Foundation, representing PMSF at conferences, in the media, and with stakeholders.
- Data Management: Ensure the integrity, security, and accessibility of research data and intellectual property. ● Innovation: Stay abreast of the latest scientific developments and emerging technologies in the field of rare diseases, incorporating relevant advancements into the Foundation’s initiatives.
- Develop Annual Research Goals and Objectives: Set annual research goals and objectives, and report quarterly progress to the CEO and Board of Directors.
- Perform duties of Principal Investigator for genetic registry, ensuring IRB compliance.
Description of Duties
- Encourage collaboration and build relationships with key stakeholders in Phelan-McDermid syndrome research and serve as a liaison to key organizations as appropriate.
- Support the Chief Executive Officer in developing and maintaining relationships with key stakeholders in industry, sister organizations, and the medical community.
- Identify opportunities for the Foundation to significantly impact scientific progress related to Phelan-McDermid syndrome.
- Engage with families and stakeholders to communicate and explain scientific findings.
- Represent the Foundation at national and international meetings and perform other duties as required to fulfill the aforementioned roles and responsibilities.
Qualifications
- Education: PhD, MD, or equivalent in a relevant scientific discipline.
- Experience: Minimum of 5 years of experience in a similar role or in academicresearch, with a focus on genetics, neuroscience, or rare diseases.
- Leadership: Proven track record of strategic leadership and management in a research or academic setting.
- Grants: Experience in securing research funding through robust grant applications and managing grants dispersed by the Foundation
- Collaboration: Strong collaborative skills, with experience working with diverse stakeholders, including academic institutions, industry partners, and patient communities.
- Communication: Excellent written and verbal communication skills, with the ability to convey complex scientific concepts to both scientific and non-scientific audiences.
- Passion: A deep commitment to advancing research and improving outcomes for individuals with rare diseases.
Compensation and Benefits
- Salary: $100-125k
- Position Type: Full-time remote
- Benefits:
- Flexible work schedule
- Retirement Plan
- Telehealth Option
- Unlimited PTO
- Phone & equipment stipend
How to Apply:
Interested candidates are invited to submit a letter of interest and their CV to Ronni Blumenthal, CEO, at [email protected] by 8/23/2024 The Phelan-McDermid Syndrome Foundation is an equal opportunity employer. We celebrate diversity and are committed to creating an inclusive environment for all employees.
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