About Amyloidosis Research Consortium

The Amyloidosis Research Consortium (ARC) is a 501c(3) nonprofit organization founded in 2015, harnessing the power of collaboration and innovation to advance science and both improve and extend the lives of those with Amyloidosis. We are dedicated to transforming the way research is being done and focus on what will have the most significant impact on improving the lives of amyloidosis patients. We forge collaborations across industry, research, clinical care, and regulatory to address unmet needs and accelerate the discovery of new treatments. ARC empowers and supports patients by ensuring they have access to the best quality care and information. ARC now has a staff of 14 professionals, and a $4.5M budget with a Development Team revenue goal for 2026 of $1M.

Amyloidosis is a group of diseases where abnormal proteins build up in organs, causing progressive damage. In the U.S., approximately 3,800 new AL amyloidosis cases are diagnosed annually. However, ATTR amyloidosis affects far more people: over 100,000 Americans have the age-related form, and 50,000 people worldwide have the inherited form. Studies show that roughly 13% of older heart failure patients actually have undiagnosed ATTR amyloidosis, meaning the true patient population is even larger. As awareness and diagnosis improve, the community continues to grow.

To learn more about ARC, visit http://www.arci.org.

About the Position

The Director of Development will lead the strategic growth of ARC’s philanthropic revenue. This individual is responsible for the full donor lifecycle—from discovery to stewardship—with a heavy emphasis on high-touch major gift fundraising. The Director will manage an active portfolio of donors and prospects, secure new institutional and foundational giving, craft donor-facing communications and materials,empower a Board Development Working Group to expand ARC’s influence and financial sustainability, and serve as a key advisor to the CEO.

Reports to: Chief Executive Officer (CEO).

Management: Supervises Development Operations Manager, whose responsibilities include CRM/Salesforce and data management, acknowledgements and receipts, mid-year and annual direct mail and electronic appeals, foundation and grant tracking, and donor prospecting, research and reporting to advance new constituents with major donor potential coming into the organization.

Location: Remote, organization is based in Newton, MA but team is fully remote.

Travel: 25%-35% to meet with donors, attend staff gatherings, and related conferences and events.

Responsibilities

Major Gift Leadership & Portfolio Management

• Direct Solicitation: Own and advance a personal portfolio of 75+ major donor prospects, driving the strategy for discovery, cultivation, and engagement; actively engage in weekly 1:1 calls and emails with donors within the portfolio and to prospective donors.
• Pipeline Management: Lead bi-weekly donor pipeline review meetings with the CEO and Development Manager to ensure rigorous movement and accountability across all prospects; design, own, and maintain the structure of the donor pipeline, including stages, qualification criteria, and movement standards.
• CEO Partnership: Serve as the lead strategist for the CEO’s portfolio of 25+ top-tier prospects, providing the research, briefing materials, and follow-up support necessary to close transformational gifts.

Communications & Operations Oversight

• Messaging & Collateral: Craft compelling donor-facing materials, including the Case for Support, impact narratives, and mission-driven storytelling.
• Program Alignment: Ensures alignment between fundraising strategy, communications, and program needs; organizes and manages work with program/department leads to produce major donor materials.
• Revenue Ownership: Owns all development revenue targets and forecasting, using a clear, disciplined methodology to set achievable growth goals, regularly reforecasting to flag risks early.
• Team Management: Directly manage the Development Operations Manager, ensuring excellence in:
• • Data Integrity: Oversight of Salesforce/CRM management and reporting.
  • Annual Giving: Execution of mid-year and annual direct mail/electronic appeals.
  • Donor Intelligence: Robust research and prospecting to identify new constituents with major gift potential.
  • Donor Follow-up: Ensure prompt phone and email follow-up to donor inquiries.
  • Compliance: Timely acknowledgments, receipts, and grant tracking.

Board & Volunteer Engagement

• Development Working Group: Build, educate, and manage a dedicated group of volunteer leaders.
• Leveraging Networks: Support this group in cultivating a collective portfolio of 10–25 high-level prospects.
• Regional Events: Organize and execute efficient, high-impact regional donor engagement and solicitation events hosted by volunteer leaders.

Institutional & Foundation Growth

• Philanthropic Foundations: Lead the strategy for non-industry foundation support, including proactive research, drafting Letters of Intent (LOIs), and developing full grant proposals and stewardship reports.
• Expert Integration: Facilitate meaningful engagement between donors and ARC’s internal and external subject-matter experts to demonstrate the technical impact of their support.

Core Expectations

• Player-Coach Leadership: Moves seamlessly between strategy, leadership, and hands-on execution; able to design high-level fundraising plans and personally carry responsibility for implementing them.
• Capacity-Aware: Operates effectively within the resourcing realities of a small nonprofit, adapting ambitions to available staffing, systems, and budget.
• Outcomes Ownership: Takes full ownership of development results; responsible not just for creating plans, but for ensuring they are executed, adjusted, and ultimately successful.
• High-Accountability: Thrives in environments that are evolving and growing; brings clarity, momentum, and accountability even when conditions are dynamic.

Qualifications

• Experience: 8+ years of fundraising experience, specifically in major gifts and foundation relations (disease-specific nonprofit or foundation experience preferred).
• Technical Proficiency: Proficient knowledge of Salesforce or similar CRM systems for pipeline management.
• Leadership: Proven ability to manage staff and work effectively with high-level volunteers and C-suite executives.
• Communication: Superior writing and presentation skills, with the ability to translate complex scientific research into moving philanthropic narratives.

Performance Success Indicators

• Achieve individual donor and major gift revenue targets.
• Growth in the total value of the major gift pipeline.
• Success rate of the CEO’s top-prospect solicitations.
• Growth in annual gift pipeline, including conversion of constituents into donors.  
• Increase in donor engagement through high-quality, targeted communications and materials 
• Engagement of Board in donor cultivation and stewardship toward solicitation. 
• Achievement of non-industry foundation revenue targets.
• Data accuracy and timely stewardship reporting.

This is an exciting opportunity to work at a growing organization, with a team that values a diversity of experience and demonstrates an unwavering commitment to the amyloidosis community.

Equal Employment Opportunity
 We are proud to be an equal opportunity employer – and celebrate our employees’ differences, regardless of race, color, religion, gender, sexual orientation, gender identity, national origin, age, disability, or Veteran status.

Additional Information

Remote Work Opportunity - Work Schedule & Expectations:

This is a full-time, exempt position requiring 40 hours per week. The role is fully remote, with standard working hours from Monday to Friday, 9:00 AM to 5:00 PM Eastern Time, to ensure effective collaboration with the team.

Comprehensive Benefits Package:

• Paid Time Off (PTO): 4 weeks of vacation time, 8 days of sick leave, 10 holidays, and 2 floating holidays. Additionally, we offer PTO-Free Days during the extended holiday break from Christmas to New Year’s Day.
• Medical, Dental, Vision Insurance: Employees have access to comprehensive contributory health plans; and ARC covers 65% of individual and family medical and dental insurance premiums.
• Life and Disability Insurance: 100% employer-paid Life and AD&D coverage, along with Short-Term and Long-Term Disability insurance.
• Flexible Spending Accounts (FSA): Options for both Health and Dependent Care FSAs.
• 401(k) Retirement Plan: Up to a 4% employer match to support your financial future.
• Additional Benefits: Employee Assistance Program (EAP), Workers’ Compensation, and other resources to support your well-being.