Chief of Staff, Celiac Disease Foundation

Location: The Foundation is a national organization with employees located throughout the United States. Employees will be supported to create a safe and conducive home work environment and be expected to travel to an in-person team meeting annually, at the Foundation’s expense.
Wage Category: The salary range for this position is $200,000 - $225,000 depending on qualifications.

The Chief-of-Staff (COS) is a key advisor and partner of the CEO in the overall leadership of the organization and supports the CEO in her work with the Board of Directors. The COS is the overall strategic leader of development and has day-to-day management responsibility for the Development team, and management oversight of the Scientific Affairs and Policy & Communications teams.

The COS is an organization-wide resource for each team and the steward of our collaborative and supportive organizational culture. As the next most senior executive to the CEO, the COS works to build, focus, and prioritize organizational capacity and is able to seamlessly step into key decision-making when needed. Working symbiotically, the COS supports the CEO’s focus on developing global relationships and execution of the strategic plan.

The Celiac Disease Foundation established in 1990, is a leading global patient advocacy organization committed to accelerating diagnosis, treatments, and a cure for celiac disease. Our mission is to improve the health and well-being of the millions of individuals around the world affected by this genetic autoimmune disease through our strategic investments in research, advocacy, and education.

Celiac disease is one of the world’s most prevalent genetic autoimmune diseases, affecting an estimated 1 in 100 people worldwide, 60-70% of whom are undiagnosed. Causing the body to attack its own small intestine, it can lead to many other devastating health conditions, including cancer and heart disease. Unfortunately for the millions who suffer in the United States, celiac disease has largely been ignored by our federal government, which until recently had provided little to no funding for research or public awareness of this life-changing diagnosis.

We have built an array of services specifically designed to serve the d istinctly unique needs of the celiac disease patent community. Our iCureCeliac® patient registry and extensive patient recruitment services at enable us to identify qualified patient candidates and speed their enrollment in trials and studies to advance critical celiac disease treatments.

Our unparalleled advocacy program has led the way to secure federal recognition and first-ever research funding from agencies including the U.S. National Institutes of Health and the Department of Defense, and to establish the House Celiac Disease Caucus. We adhere to the highest scientific and ethical standards as we work each day to promote understanding of celiac disease, empower our patient and provider community, and collaborate with partners and stakeholders to carry our mission forward.

Under the leadership of CEO Marilyn Geller, the Foundation has experienced significant growth since 2012 – from a budget of $250,000 to a budget of $3.5M – with $5M in reserves today. On this strong financial footing, we are poised to grow our impact in the years ahead as outlined in the forthcoming Strategic Plan.

In addition to the Foundation’s robust partnerships with biopharma and food companies, the organization seeks to strengthen its fundraising strategies to include planned giving, institutional grants and a major gifts program, while also expanding on existing success with events, individual giving and annual campaigns. Our curated – 100,000-strong – opt-in database provides additional opportunities to significantly grow our individual donor base.

Principal Duties And Responsibilities

  • Expand Foundation’s funding base, growing all verticals – business opportunities, major gifts, annual campaign, corporate/philanthropic relations, institutional (corporate, government and philanthropic) grants, planned giving, events and direct mail/email;
  • Continue to grow organizational capacity through leadership of the current staff, developing members and their strengths, and stewarding a healthy organizational culture;
  • Collaborate with the CEO to cultivate and maintain relationships with board members, advisors, and other opinion leaders and influencers key to the execution of the Foundation’s research, advocacy, and education agenda;
  • Collaborate with each team to develop annual budget proposals that reflect the goals and objec- tives in the strategic plan, the needs of the dynamic and changing organization, and prioritize financial resources.


  • Provide strategic and insightful leadership to develop new opportunities to grow and extend the Foundation’s brand and support development efforts;
  • Hire, lead, mentor, supervise, and evaluate team of three (in-house and contractor) to manage

Development (cont.)

existing corporate partnerships, individual giving, annual campaigns, and events;

  • Lead and grow team to create and implement new programs in planned giving, major gifts and institutional grants (corporate, government and philanthropic);
  • Strengthen and expand the Foundation’s partnerships with the academic community to extend the Foundation’s brand and increase its visibility;
  • Manage existing and grow new partnerships with companies serving the celiac patient community (e.g., biopharmaceutical, gluten-free products and services);
  • Identify new prospective donors and organizational partners to grow fundraising annually and consistently over time;
  • Personally engage in cultivation and stewardship of new and existing funders, stakeholders, and partners;
  • Edit and approve grant proposals, reports, and updates developed by the team;
  • Oversee production of Foundation’s key fundraising events and campaigns, including Turkey Trot, May Celiac Disease Awareness Month, and endurance fundraising program;
  • Collaborate with Policy & Communications team on content and approve all prospect and donor communications (direct mail, email, social media).

General Management

  • Key advisor to CEO; provide counsel and strategic insight in the overall leadership of the organization;
  • Partner with CEO to enhance organizational effectiveness; define operational expectations, monitor progress, and provide day-to-day staff leadership;
  • Resolve operational and administrative issues; interpret policy and ensure consistency of values, policies, and procedures; keep CEO apprised of
  • Collaborate with CEO and teams to develop annual budgets and monitor their use;
  • Focus and prioritize organizational capacity to effectively execute on the board-adopted strategic plan and team-developed goals and objectives;
  • Lead team efforts to develop workplans based on goals and objectives; ensure that individual employee goals and evaluations are appropriately calibrated annually;
  • Shape and cultivate teamwork; continue to grow the collaborative organizational culture that supports continuous improvement, accomplishment, and employee growth;
  • Plan and lead all-staff meetings;
  • Oversee team and individual employee appreciation, recognition, and social opportunities;
  • Maintain superior level of technical and operational accuracy and quality throughout the organization.

Board of Directors

  • Serve as primary partner to CEO in working with Board of Directors, Medical Advisors, and Research Committee;
  • Plan and coordinate in-person strategic planning/update Board retreat and four virtual Board meetings annually.

Policy, Advocacy, Communications & Scientific Affairs

  • Partner with Vice President of Policy & Communications and Director of Scientific Affairs to support their leadership and day-to-day management of their teams;
  • Coach, advise, and serve as thought-partner to Vice President and Director in developing new proposals, addressing operational issues, and problem-solving while keeping the CEO apprised and involved, as needed.


The ideal candidate is highly motivated to support the mission of the Foundation to drive diagnosis, treatments, and a cure for celiac disease and to improve the quality of life for our patient community, is an organization-wide strategic thinker, has an entrepreneurial track-record of driving growth, and possesses significant experience in leading and managing teams, systems, and processes to grow organizational capacity.

A qualified executive brings development expertise across multiple verticals, and willingness to broaden their organizational impact by serving as COS while growing their general management experience. They must be a naturally effective interpersonal communicator and relationship-builder who easily cultivates trust with senior executives, institutional partners, and corporate stakeholders. The capacity to spearhead strategy development while simultaneously leading execution of numerous business lines with a high degree of ownership and attention to detail is critical in this role.


  • Strategic, entrepreneurial, adaptive, creative thinker and leader of teams;
  • Comfortable in a fast-paced, dynamic environment;
  • Results-oriented with strong follow-through;
  • Quick study who exercises good judgment – even when information is incomplete or ambiguous;
  • Promotes and models a collaborative culture;
  • High degree of emotional intelligence and empathy, ability to gain and maintain trust;
  • Outstanding writer and editor of content;
  • Politically astute and tactful, attentive to perspectives and competing interests of various internal and external stakeholders;
  • Sense of humor;
  • Mindful of appropriate handling of confidential materials and patient information.


  • 10 years of progressively more responsible leadership or management experience, including some management of remote teams;
  • Track record of success in developing strategy and day-to-day operations of non-profit fundraising, including planned giving, major donor cultivation and stewardship, corporate relations, events, direct mail, and grant writing;
  • Reputation as a strategic thinker with a strong entrepreneurial track record of driving new initiatives that grows brands and fuels fundraising;

Experience (cont.)

  • Recognized as an effective thought partner and collaborator to top decision-makers, possessing the insight, sound judgement, and creativity to offer solutions to complex challenges, coupled with the confidence and tenacity to effectively represent their point of view;
  • Reputation as an effective people manager who actively provides direction, guidance, feedback, and encouragement to strengthen knowledge, develop skills, accomplish tasks, and address challenges;
  • Previous success at multi-tasking, prioritizing, and maintaining flexibility to adapt to changing demands and priorities;
  • Track record of promoting and nurturing collaboration across an organization and within a team;
  • Previous experiences in software, research, and policy/advocacy a plus.


Bachelor’s Degree from an accredited college or university.

More Information

Health Benefits

Employees can access a wide range of medical (PPO & HMO), dental, and vision insurance options for themselves and their dependents through TriNet after two months of employment. The Foundation contributes toward the elected plans to ensure that employees have comprehensive coverage, and Flexible Spending Account benefits are also available.


The Foundation offers a generous 403 (b) plan. Employees may deposit up to 6% of their pay after 90 days of employment and are eligible for up to a 6% match after 12 months of full-time employment. There is no vesting requirement.

Additional Benefits

The Foundation also offers: employer-sponsored short-term disability and long-term disability for employees, Employee Assistance Plan for employee, household, and dependent children (up to age 26); employer-sponsored basic life insurance and Accidental Death and Dismemberment insurance through TriNet.

Time Off

14 paid holidays, up to three days of Bereavement Leave, up to three weeks paid vacation through year two, growing to four weeks of paid vacation at year five of employment. Employees work 9-80 work schedule, having every other Friday off.


The Celiac Disease Foundation is partnering with Justus McGinity Executive Search for this recruitment. To apply for this opportunity, send your cover letter and resume to Julie Justus McGinity, Principal, Justus McGinity Executive Search at [email protected]. Interested candidates are encouraged to submit materials promptly. Application materials will be accepted until the position is filled. Only candidates who move beyond the review of submitted materials will be contacted.

The Celiac Disease Foundation is an equal opportunity employer. We strongly encourage and seek applications from women, people of color, including bilingual and bicultural individuals, as well as members of the LGBTQ+ communities.

All qualified applicants will receive consideration for employment without regard to age, race, color, religion, sexual orientation, gender identity, parental status, national origin, ability/disability status, protected veteran status, or any other characteristic protected by law.