PMSF Strategic Plan


Advocate for families affected by Phelan-McDermid Syndrome globally and accelerate the search for a cure.


To improve the quality of life of people affected by PMS worldwide by providing family support, advancing research, and raising awareness about Phelan-McDermid syndrome.


The Phelan-McDermid Syndrome Foundation has developed five goals with associated objectives for key strategic initiatives.  A project plan is developed for objectives including resource plans, budget, timelines and key performance metrics. Metrics are continuously monitored and reported to the board of directors quarterly to facilitate data driven-decision making.  The goals are objectives are:


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

  • Develop a Capacity Plan that will evaluate and expand the human resources throughout the organization including the board of directors, leadership staff, key volunteers, and advisors.
  • Build and maintain an organizational structure that reflects a clear and effective leadership, advisory, employee and volunteer reporting structure.
  • Maintain transparent and effective financial policies, procedures, budgets and plans to continually expand the organization’s financial capacity to achieve its vision, mission, and strategies.
  • Continue to develop and maintain operating policies, procedures, and quality records to ensure responsibilities are clearly communicated throughout the organization and tied to the goals and strategies of the foundation


Develop the capacity to raise millions of dollars and strengthen financial viability to support the mission of PMSF by diversifying sources of revenue.

  • Increase family run events through targeted engagement of families and their networks.
  • Develop a foundation Roadmap/Campaign that expands PMSF fundraising focus to include not only family fundraising events but also focus on “donor centric” and “gifts-driven”, “board involvement” programs by cultivating meaningful relationships, and extending stewardship of long-term planned giving over the next three years.
  • Develop capacity to conduct grant research, grant writing and grant management.
  • Maintain and manage existing fundraising campaigns.
  • Continually expand fundraising opportunities.


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.

  • To enhance financial resources for PMS research through a coordinated funding strategy
  • To fund one or more grants that increase replication and validation of model system findings,
  • To announce one or more funding opportunities per year that build the field of research.
  • To fund one or more seed grants per year that facilitate novel directions in PMS research.
  • To make patient-contributed data available to explore natural history and enroll patients into clinical research studies & trials.
  • To provide grants that improve clinical trials readiness.
  • To fund one or more seed grants that address a high priority quality of life(QOL) issue in PMS
  • To improve clinical care recommendations through the sponsorship of a consensus meeting.
  • To increase the uptake of clinical care guidelines through the development of content.
  • To improve patients’ access to care through the establishment of PMS Centers of Excellence.
  • To fund at least one grant to understand what factors underlie the variability in PMS.
  • To enable sharing of unpublished data and opportunities for collaboration by holding at least one PMSF-sponsored research meeting per year.
  • To influence PMS research and stimulate new ideas and projects through ongoing communication with scientific stakeholders.


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.

  • Ensure job descriptions and expectations of Regional Reps are clearly defined and understood.
  • Characterize, manage and increase foundation membership through a membership drive.
  • Expand in-person initiatives including international conference, semi-regional conferences, and regional meetings.
  • Strengthen the Global Partners Program to support families living internationally who choose to create their own associations to support families in advocacy, support and research.


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.


  • Develop a coordinated social media plan.
  • Develop PMSF messaging plan that promotes foundation goals and accomplishments.
  • Establish and protect PMSF brand identity.
  • Identify, produce and monitor the effectiveness of monthly awareness media.
  • Establish a foundation communication policy and structure to effectively deliver key messages.
  • Raise awareness of Phelan-McDermid syndrome in the scientific and medical communities.

Legislative Advocacy:

  • Develop a plan between the Legislative Advocacy committee(LAC) with Consultant that includes a focus on Appropriations.
  • Continue advocacy efforts to recruit and foster champions in Congress through meetings with lawmakers or key members of their staff, track key legislation, policies or initiatives that affect the rare disease and special needs communities, build relationships with key US Congressional Members and communicate with PMSF advocacy network through email blasts.
  • Develop relationships with health agencies that could provide funding for PMS initiatives throughout the year, tracking participation semi-annually.
  • Participating in rare disease coalition groups, advocacy events throughout the year including conferences, alliance memberships.
  • LAC Awareness/Social Media/PMSF Website Content; submit one #pmsfadvocacy submission for the monthly PMSF newsletter, social media; encourage members to submit LAC related photos and content, create LAC related advocacy webinars, and encourage participation in rare disease events. Update LAC webpage at least bi-monthly with current legislative content
  • Develop the LAC committee to include a team of volunteers including volunteers who serve in a more involved/strategic capacity.
PMSF | Phelan-McDermid Syndrome Foundation