Mission, Vision & Values

About Us

The National Scleroderma Foundation’s mission is to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families and support networks.

Our vision is to be a relentless force in finding a cure and improving the lives of people affected by scleroderma.

Values and Culture

  • The National Scleroderma Foundation operates in accordance with the highest professional standards in all relationships.
  • The Foundation leads with trust and integrity – supporting the goals defined by its mission, vision and values.
  • The Foundation fosters a climate that encourages innovation, creativity and diligence among staff and volunteers across the organization.
  • The Foundation fully embraces responsibility and accountability for the stewardship of the resources entrusted to it.
  • The National Scleroderma Foundation seeks to promote gender equality and increase diversity, in all its forms. We know that our greatest strengths come from the people who make up our team.

Thank you for joining us on our journey to be a relentless force in finding a cure.

Strategic Plan (2020-2022)

The Board of Directors approved a strategic plan in 2020 focused on increasing capacity and infrastructure to build a foundation for the future. The planning process included an analysis of environmental factors that impact the Foundation, and an assessment of current activities.  Stakeholder input from chapter and national leadership and staff, and from foundation members and donors was also carefully considered. Each of these input sources informed the final plan, which is included in the sections below.

Three major themes emerged during the planning process: effectiveness, efficiency, and our scale or reach as an organization. The strategies around effectiveness were designed to establish or enhance existing effectiveness of our programs. In terms of efficiency, leadership identified the need to keep it simple and not reinvent. And finally, we want to leverage our scale and reach, to ensure that we’re meeting people where they are.

Stakeholder Updates

Attend quarterly stakeholder updates presented by CEO Mary J. Wheatley, IOM, CAE. Learn about progress in our exciting work to strengthen our organization and to build capacity for growth in support of individuals affected by scleroderma, to expand our education programs, and to build greater resources for research funding. Recordings of past updates are listed below and are saved to the Foundation’s YouTube channel.  To receive notifications of future stakeholder updates, subscribe to the Foundation’s weekly eLetter.

Upcoming Stakeholder Update:

June 16, 2022, 4 p.m. Eastern, Zoom Registration

Recordings of Quarterly Updates:

Fundraising Capacity

  • Increase staff infrastructure (major gifts, corporate fundraising)
  • Conduct basic training for staff leadership on fundraising approaches and strategies
  • Create formal major donor portfolios and measure returns
  • Implement engagement opportunities for major donors
  • Establish and conduct unified campaigns and initiatives
  • Focus on elevating institutional self-esteem by sharing case studies, donor feedback and big wins

Donor Focus

  • Centralize all donor records
  • Identify potential donors through screening and referrals, philanthropic capacity, and inclination
  • Catalog, prioritize, and engage with select corporations.
  • Clearly define roles and responsibilities for donor management.
  • Establish donor acknowledgement platforms
  • Create a Legacy Society for planned giving donors
  • Implement legacy naming opportunities (grants, events, etc.)
  • Create comprehensive stewardship plans

Organization Structure

  • One national, unified organization—bring affiliate chapters under national organization
  • Conduct pilots of organizational structure/interaction framework
  • Eliminate chapter revenue share and monthly chargebacks
  • Streamline financial reporting
  • Assess chapter capacity
    • Establish minimum requirements for geo coverage and functions
    • Maintain at least one paid employee at each chapter
  • Position chapters (regional, state, or local) to achieve:
    • Actual or virtual coverage for any patient or caregiver
    • Greater focus on patient services mission, while still driving grassroots fundraising activities

Events Planning and Management

  • Hire Director of Special Events to plan, advise, coach, and train chapter employees and volunteers on events
  • Produce event templates providing detailed guidance on most common events
  • Set standards (and measure) to act as filters for event cost vs. return
  • Establish “think tank” of chapter representatives and individual event organizers to identify and design new types of events
  • Identify new & refreshed events with a unified and synchronized calendar of activities across the organization
  • Seek and secure national sponsorships for key event(s)
  • Engage comprehensive and efficient direct mail/email vendor

Operations

  • Define and publish clear roles & responsibilities across organization
  • Guarantee chapter operating budgets supported by a robust planning and regular review process
  • Implement technology platform and enhance user content to better meet needs
  • Evaluate and align staff to evolving operating model
  • Validate or realign fiscal calendar to create one unified calendar
  • Establish national purchasing capability.
  • Centralize gift entry
  • Formalize comprehensive on-boarding toolbox for staff and volunteers