Strategic Plan

The Phelan-McDermid Syndrome Foundation has developed five mission-focussed strategic goals with associated objectives, metrics and outcomes.  Key performance indicator metrics are continuously monitored by leadership to facilitate data-driven decision making.

PMSF Strategic Goals


GOAL # 1

Maintain an effective organizational infrastructure

To create and maintain an infrastructure that will propel the foundation forward with the passion, perseverance, courage, and drive upon which the foundation was founded. Actively recruit, develop and evaluate resources who embody the foundation vision and mission.

2018 Priorities:  Scientific leadership, Strategy, Metrics, Organization structure, Board development.

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GOAL # 2

Build relationships and diversify fundraising and revenue streams.

Develop the capacity to raise millions of dollars and strengthen financial viability to support the mission of PMSF by diversifying sources of revenue to change from individual event-focussed to donor-centric development.

2018 Priorities:  Storytelling, Strengthen Culture of Philanthropy, and Continually expanding fundraising opportunities.

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GOAL # 3

Build and manage a targeted research portfolio.

To support the development of effective therapeutic treatments through scientific research, improve the quality of clinical research and care available to families, and improve communications and collaborations in PMS research by providing financial resources, developing relationships, engaging families, continually monitoring the research landscape and managing resources toward targets of greatest return for the PMS community.

2018 Priorities:  External research landscape and portfolio analysis.  Targeting research program efforts to maximize influence on PMS research.

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GOAL # 4

Strengthen our Family Support Network.

To improve the quality of life of parents, families, caregivers and individuals with PMS through effectively understanding and addressing needs, strengthening family-to-family and regional supports.  Support families living internationally who choose to create their own associations to support families in advocacy, support and research through successful communication with partners.

2018 Priorities: Family needs assessment, membership characterization, strengthen regional support, increase in-person interactions, global partners.

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GOAL # 5

Tell our story to advocate for partnerships, legislation and funding.

Identify and execute strategies that will be effective in communicating PMSF mission, vision, goals, and values. strategies, and accomplishments to engage stakeholders to help PMSF achieve its mission.

To continue advocacy efforts to recruit and foster champions in congress through meetings with lawmakers and participating in rare disease coalition group advocacy events throughout the year.

2018 Priorities: Branding, coordinated messaging, advocating for access to care, education & therapy, research, rare disease community collaborations.

+  PMSF Advocacy

PMSF | Phelan-McDermid Syndrome Foundation