Executive Director

Executive Director

Foundation for Ichthyosis and Related Skin Types (FIRST)

Colmar, Pennsylvania (Philadelphia area)

Background

The Foundation for Ichthyosis and Related Skin Types, or FIRST, is the world's leading patient advocacy organization dedicated to improving lives and seeking cures for these conditions. Ichthyosis is a family of rare genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. FIRST educates, inspires, and connects affected individuals, their families, clinical professionals, academic and biopharmaceutical researchers, and the general public. The foundation accomplishes this through national and regional conferences, advocacy, and support for research for better treatments and eventual cures. FIRST provides information resources, connections to the world’s leading ichthyosis experts, and emotional support to individuals and families. These programs and services improve their lives. FIRST has an active medical and scientific advisory board and co-sponsors a patient registry based at Yale University that is an invaluable resource for research.

Throughout its 39-year history, FIRST has adapted to many changes, but one constant has been providing hope and inspiration for families facing these difficult and, in some cases, life-threatening disorders. With the advent of social media, the proliferation of information on the Internet, and the ongoing potential for significant research discoveries and therapeutic development, FIRST now needs a leader who can innovate and articulate the value proposition for 2020 and beyond. For more information about FIRST, please visit the website at FirstSkinFoundation.org.

Position Summary

FIRST is seeking a new Executive Director to provide thought leadership in developing FIRST’s strategic future. The successful candidate will be able to skillfully engage the membership, board, staff, funders and the biopharma industry to work together to improve the lives of affected individuals and their families. Key attributes we are seeking include strong management skills and proven ability to generate resources to achieve the organization’s mission.

Responsibilities

• Provide thought leadership and engage the board, staff, membership and other key constituencies in developing the organization’s strategic future.
• Engage and grow the membership through national and regional conferences, social media and other forms of outreach.
• Skillfully manage staff, programs and financial resources to achieve the goals of the organization.
• Ensure the necessary resources are in place to successfully pursue FIRST’s mission.
• Actively seek new opportunities and partnerships to advance the organization’s objectives, including specifically with the biopharma industry.
• Be an advocate for the interests of affected persons in legislative policies and public forums.
• Maintain the financial integrity of FIRST and ensure compliance with all legal, contractual and fiduciary obligations.

Professional Qualifications & Personal Characteristics

• Passion for the mission of FIRST and heartfelt empathy for those afflicted.
• A successful track record of nonprofit management, with excellent organizational and team-building skills.
• Strong interpersonal skills as a convener for the network and as a bridge-builder to forge partnerships among stakeholders.
• Ability to build rapport and work effectively with volunteer non-profit boards, committees and members.
• Entrepreneurial spirit who actively seeks new opportunities to advance innovative initiatives.
• Budgeting, accounting and financial management experience.
• Minimum of a bachelor’s degree in a relevant field.
• Nonprofit fundraising experience, including major gifts, grant writing and grass roots campaigns preferred.
• Experience in or understanding of the biopharma, life science, or academic research communities would be viewed as a plus.

Location & Compensation

FIRST is headquartered in Colmar, Pennsylvania. The preference is for the Executive Director to be based there, though a remote work arrangement may be an option for the right candidate. Potentially 20% or more of Executive Director’s time will be required for travel around the country in pursuit of the organization’s mission. Salary is commensurate with experience.

Non-Discrimination

The Foundation for Ichthyosis & Related Skin Types (FIRST) is committed to providing a productive and professional environment in which volunteers and staff work together with mutual respect and appreciation of their diversity to achieve the mission of the Foundation. FIRST is committed to the principle of equal opportunity and does not discriminate against individuals on the basis of race, color, sex, sexual orientation, gender identity, religion, disability, age, veteran status, ancestry, or national or ethnic origin in the administration of its policies, programs, and other activities. This applies to all personnel decisions, including recruitment, hiring, promotions, salary actions, separations and training, for all job classifications.

Application Process

The search for the new Executive Director is being conducted for FIRST by the Moran Company. To apply for this position, submit cover letter and resume to Steven Byers, The Moran Company.  APPLY NOW