Senior Director, Mission Delivery

National Scleroderma Foundation

Job Description

ABOUT THE FOUNDATION: A relentless force in finding a cure and improving the lives of people affected by scleroderma, the National Scleroderma Foundation advances medical research, promotes disease awareness, and provides support and education to people with scleroderma, their families and support networks. Supported by a network of thousands of individuals across the United States, the Foundation is the leading nonprofit funder of peer-reviewed research to discover the cause, understand the mechanisms, and overcome scleroderma forever. The Foundation embraces an intentional organizational culture in which everyone can share openly and engage authentically. National Scleroderma Foundation has been recognized for its commitment to financial transparency and reporting with six consecutive years of four-star ratings by Charity Navigator, and a platinum seal of approval by Candid. For an overview of the Foundation, click here or visit the website at scleroderma.org.

 
RESPONSIBILITIES:
 
Leadership and Strategy 
  • Responsible for the strategic direction of the Foundation’s Mission Delivery team 
  • Provide leadership and guidance in designing programs and services that support the patient journey from symptoms to diagnosis to living well with scleroderma 
  • Represent the Foundation to the top levels of many national and international organizations, including but not limited to the National Institutes of Health, FDA, CDC and CMS, other Foundations, and patient advocacy organizations 
  • Serve as internal subject matter expert on issues and topics related to scleroderma education, support and research
  • Provide periodic program reports to key stakeholders, including development staff, funders, and volunteer leadership 
  • Work with volunteer leaders and staff to accomplish the Foundation’s mission priorities as outlined in the strategic framework 
  • Serve as staff liaison for the Medical and Scientific Advisory Board (MSAB) and Patient Advisory Board (PAB) 
  • Prepare agendas and meeting materials for quarterly MSAB and PAB meetings, in partnership with the Chairs 
  • Ensure timely and appropriate follow-ups for Advisory Board meetings 
  • Oversee projects and activities as determined by Advisory Boards and the Board of Directors 
 
Implementation of Programs and Services 
  • Oversee successful planning and implementation of programs and services in three mission pillars (support, education and research) 
  • Establish comprehensive standard operating procedures and corresponding program evaluation process 
  • Manage database of programs and services and track key metrics to ensure effectiveness 
  • Design, create and present quarterly reports on mission delivery, including key metrics and outcomes 
  • Track research portfolio and outcomes, providing regular reports and updates on for key staff and leadership 
  • Ensure updated content and materials describing available programs and services are available to people with scleroderma, their families and support networks, including fact sheets, mailers, palm cards and web content 
  • Create schedule for timely updates to educational / informational literature
  • Serve as technical writer / copy editor, working with Advisory Boards on literature updates, fact sheets  
 


Inter-Organizational Collaboration 
  • Establish an annual budget for programs and services, in collaboration with Finance, Development and Chapter Operations 
  • Work closely with the Senior Director, Development in identifying grant opportunities and preparing stewardship reports
  • Work closely with the Development team to produce timely updates and reports regarding support by corporate and individual donors
  • Work closely with Senior Director, Chapter Operations to maximize national and regional resources to deliver mission critical programming 
  • Work collaboratively across the organization to ensure programs and services are meeting the needs of the scleroderma community 
  • In partnership with Director, Communications, create communications plan and materials for programs and services 
  • Other duties as may be assigned by the CEO
 
QUALIFICATIONS
  • Bachelor of Science degree required, Master’s degree preferred 
  • 10 years experience in nonprofit programs and services required
  • Experience in non-profit management required, including staff support and management, as well as project and financial management
  • Strong technical writing skills, medical writing experience required 
  • Excellent oral and written communication skills, as well as interpersonal skills required.
  • Must possess ability to interact with volunteers, staff and external agencies in a professional, collaborative and diplomatic manner
  • Complex problem-solving and decision-making skills
  • Consensus-building with both internal and external constituencies
  • Self-starter with demonstrated ability to maintain accountability, manage multiple priorities, and work independently while functioning as part of a cooperative team. 
  • Extensive experience with Microsoft Office required (including Outlook, Excel, Word, PowerPoint)
  • Some travel required