Description

Executive Director

Remote
Greater Southwest Ohio/Cincinnati Metropolitan Area


About Children's Interstitial and Diffuse Lung Foundation, Inc. (chILD)


Empowering Children to Breathe, and Families to Hope

The chILD Foundation is a 501(c)(3) non-profit organization whose mission is to provide compassionate support, education, and hope to children and families affected by these life-altering diseases, as well as to accelerate research to find effective treatments and cures for all forms of Children's Interstitial Lung Disease (chILD).

chILD is not a single disease but a group of lung disorders for which there is no cure, and limited treatment options. The prognosis for children affected varies by diagnosis, but many have high morbidity, and some have high mortality rates. Without lung transplantation, the prognosis for some of these children is poor. chILD meets the qualifications as an ultra-rare disease, with a U.S. patient population estimated to be fewer than 10,000. There's presently limited knowledge of chILD disorders, even among pediatric pulmonologists.

The chILD Foundation is committed to delivering the financial resources required to make real progress towards a cure, and to improving the quality of life for kids and families impacted by chILD. Fundraising is the lifeblood for our Mission, and the only means by which we can give the breath of life to kids afflicted with children's interstitial lung diseases.

Guiding Principles

• We believethat all pediatric lung disease patients deserve access to accurate diagnoses, effective treatments, and hope for a cure.
• We believethat, while individual chILD disorders are extremely rare, collectively, this group of diseases comprises a significant number of pediatric lung disease patients that are under-represented in research and medical communities.
• We believethat working together to support all forms of chILD is the most effective way to advocate for these kids. Together we are stronger, and we will work tirelessly until we have found cures for all forms of children's interstitial lung diseases.

Strategic Objectives
In taking the lead in this fight, the chILD Foundation is focusing energy on four fronts:

• Funding Research for Effective Treatments and Cures:This is our most critical effort, because winning the fight can only be achieved with intense medical research; and because chILD has dozens of variants, research must be conducted on multiple fronts
• Providing Resources to Families:For a child suffering from a rare lung disease, a vital component of treatment is the daily care and emotional support of a loving family. The foundation serves as a reservoir and conduit for information on the various disorders, treatment options, medical specialists, research studies, Centers of Excellence, and other content to help families cope and provide the most effective support for their children.
• Documenting Patients and Disease Variations:A critical part of the battle is developing a more thorough understanding of the nature and scope of this family of ultra-rare diseases. Research is central to this effort, but it also means building a central case registry of all known patients and thoroughly documenting all known chILD variations and their symptoms, diagnosis, and treatments.
• Educating the Medical Community:As breakthroughs are achieved, it is essential to present new treatment and drug therapy knowledge to physicians, researchers, and other medical professionals to broaden the understanding of these rare conditions, to diagnose these conditions accurately, and to stimulate additional advocacy, funding, and support.

The Children's Interstitial Lung Disease Foundation had its beginnings with one dedicated doctor and five committed families.

Dr. Robin Deterding of The Children's Hospital Denver and her colleagues recognized the needs of the families affected by chILD and the potential impact of a combined effort between physicians and families focused on finding answers and successful treatment options. She succeeded in getting funding from an R-13 Institute of Health grant for the first chILD medical conference–held in conjunction with the Rare Lung Disease Consortium. Five families that had been impacted by chILD were invited to participate.

Through this first conference, these five families took the challenge and worked together to set goals and a strategy to improve the lives of other families affected by children's interstitial lung diseases. On March 27, 2004, their vision became a reality, and the chILD Foundation was established. During this conference, our logo, the pinwheel, was selected as the iconic image for chILD from a photo of Alex Porta blowing on a pinwheel.

With donations from friends and family members, the chILD Foundation began a research program that continues to grow. Since 2010, the foundation has co-sponsored several research grants with the American Thoracic Society, have partnered with international chILD groups to fund research, and have been awarded an exome sequencing grant from the Rare 99X project and more recent grants (CZI and PCORI). In addition, our Research Network has launched a patient registry to track these rare patients and create opportunities for longitudinal studies and future clinical trials.

In 2024, chILD celebrated their 20th Anniversary as an organization and now looks forward to hiring an Executive Director who will build the infrastructure and create capacity, while strategically leading planning and execution to serve this chILD community for the next 20 years and beyond.


Position Summary

The Executive Director (ED) is responsible for leading the chILD Foundation toward achieving its mission while establishing an organizational structure to scale the organization to a high-functioning and responsive leading nonprofit in children's interstitial and diffuse lung diseases.

While building effective and sustainable operations, the ED will coalesce the work of the board and transition it into a focused strategic plan to implement and sustain the organization. The ED will be an entrepreneurial, mission-driven executive leveraging best practices for the Board of Directors, multiple medical-aligned stakeholders, and families united in research, advocacy, awareness, and combating children's interstitial and diffuse lung diseases.

The ED will initially begin their tenure as a single full-time staff member, but with a board commitment to expand staffing and structure to better serve the stakeholder community through eventual functional areas of fundraising, administration, advocacy, and grant programs program oversight. In partnership with the Board, the ED will support Board development, strategic planning, and achieving a plan for annual and long-term fundraising goals. The ED is responsible for providing direction, leadership, and overseeing all aspects of the organization's staffing functions, including key volunteers and stakeholders. The ED will also represent the organization to external constituencies, including patients, families, grantors, researchers, funders, donors, elected officials, and the general community aligned with the chILD Foundation.

The chILD Foundation's Executive Director will be an engaging, thoughtful, and values-centered leader with a passion for serving the chILD community and making genuine connections across the spectrum of stakeholders. This is a considerable and consequential leadership role and one on whom stakeholders will rely to build upon its history and set a course for the future sustainability of the Foundation for years to come.


Essential Job Functions

Management + Administration

• Lead the planning, implementation, and execution of the organization's strategic plans, institutional policies, and procedures, with appropriate Board and external consultants' participation.
• Identify, monitor, and evaluate achievement of all organizational goals, objectives, and metrics while continuously aligning operational capacity with strategic priorities.
• Provide executive leadership and support to the Board and all stakeholders.
• Ensure programs and service delivery meet projected outcomes and remain in compliance with state and/or federal and grant requirements in support of chILD's mission and strategic plan.
• Ensure consistency, quality, viability, and relevance of programs that complement the organization and enhance the community.
• Purposely build an organization that follows nonprofit best practices and required state, federal, and grant regulations.

Leadership + Advocacy

• Support the development of strategic plans in conjunction with the Board and all stakeholders.
• Translate and execute the chILD Foundation's mission and desired growth into concrete, financially viable, and stakeholder-valued initiatives and programs.
• Position the chILD Foundation as a visible, trusted, and innovative resource in the children's interstitial and diffuse lung diseases ecosphere.
• Actively engage and energize the chILD Foundation's broad range of constituents and stakeholders through annual meetings, research symposia, family activities, and targeted communication strategies.
• Further develop chILD-based partnerships and coalitions to advocate awareness, research, recognition, and focus on children's interstitial and diffuse lung diseases..
• Keep abreast of trends and opportunities in relevant fields, competitive set organizations, and integrate new opportunities where appropriate.

Board Development

• Develop agendas in partnership with the Board President and timely distribute supporting materials for board (and committee) meetings.
• Support the Board in executing its governance responsibilities by keeping Board members fully informed of and advised about relevant issues through ongoing cadence of thoughtful communication.
• Support Board development efforts—including education, recruitment, and orientation—so the organization's leadership includes a diverse representation of constituents and stakeholders from across the broad children's interstitial and diffuse lung disease community.
• Organize and attend all board meetings and committee meetings as appropriate.

Financial + Information Systems Management

• Oversee activities of outsourced accounting firms and vendors.
• Develop and monitor an operating budget aligned with strategic goals and ensure the ongoing financial health of the organization.
• Develop, evaluate, oversee, and maintain sound financial practices and systems to manage day-to-day financial operations and strategic financial growth.
• In collaboration with the Treasurer, review and ensure accuracy of financial statements and schedules, including the annual audit and required tax filings.

Fundraising + External Relations

• As the executive leader and chief fundraiser for chILD, devise fundraising strategies to achieve annual goals for growing and diversifying chILD's donor base to expand the organization's financial capacity.
• In partnership with the Board and Development Manager, create, maintain, and implement a development plan to identify funding sources, diversify funding streams, and achieve strategic goals.
• Regularly analyze past and current fundraising performance to plan for and establish annual and multi-year fundraising goals.
• Oversee the organization's annual fundraising campaign and activities, including individual giving, corporate giving, grant writing and reporting, and the planning and implementation of fundraising events executed by staff, volunteers, and outsourced producers.
• In partnership with the Development Manager and Board members, identify, cultivate, nurture, and maintain relationships with a broad array of donors to build individual giving, major donor, and planned giving programs.
• Assure the effectiveness and maintenance of fundraising and donation processing systems and databases.
• Ensure compliance with grant requirements for the use of funds awarded to chILD, as well as the accuracy and timeliness of reports back to the grantor.
• Partner with the Board in developing and implementing marketing efforts to enhance organizational visibility.
• Serve as chief spokesperson for the organization.
• Create an effective communication plan for all public-facing collateral associated with the organization, including website, social media accounts, print, digital presence, and other program and fundraising materials.
• Develop and maintain strategic alliances with research leaders, hospitals, pharmaceutical companies, elected officials, and other allied organizations.
• Develop and maintain collaborative partnerships with families, members, volunteers, funders, other community organizations, and various service providers such as regional health systems, foundations, and social service agencies.

Qualifications

Education + Experience Requirements

• Bachelor's degree required, master's degree in Nonprofit Management, Public Administration, Education, or related field preferred.
• Minimum 5–7 years of nonprofit leadership experience, preferably in an organization serving families and their children.
• Demonstrated success in fundraising, donor relations, and resource development.
• Strong financial acumen and experience managing and reporting on budgets.
• Excellent communication, public speaking, and interpersonal skills.
• Passion for children's issues and a deep commitment to equity and inclusion.
• Management/supervisory experience.
• Experience working with a Board of Directors
• Knowledge of best practices, applicable laws, compliance, and statutes affecting nonprofit organizations.

Skills + Competencies

• Experience in developing and implementing a fundraising strategy/plan, with proven skill in fund development through various techniques (including major donor cultivation and solicitation, event management, grant writing, institutional partnerships, planned giving, etc.).
• Exceptional written and oral communication skills, including the ability to present and speak publicly on relevant issues.
• Proven experience in financial oversight of an organization of comparable size and complexity, and exceptional skills in budgeting and financial analysis.
• Demonstrated advocacy, commitment to, and experience in public/health policy issues.
• Exceptional interpersonal skills with a keen ability to cultivate and maintain effective relationships with diverse stakeholders, such as donors, community organizations, local and state officials, and community members.
• Experience in building, managing, and motivating staff and volunteers
• Demonstrated experience in leveraging, managing, and collaborating with a nonprofit Board of Directors.
• Embraces technology and possesses the ability to enhance systems and evaluate a variety of software and online applications.
• Willingness to travel, work evenings and weekends as needed.

Attributes of Success

• Solution-oriented approach with exceptional organizational skills.
• Passion, empathy, and understanding of adverse health issues facing children and their families.
• People-oriented/relationship-based professional with the ability to create connected relationships with diverse stakeholders across the medical, research, and professional society communities
• Enterprising spirit demonstrated by creativity and flexibility in aligning strategic goals while developing and extending organizational capacity
• Roll-up-your-sleeves mentality; focused on longevity with a willingness and desire to be in the trenches driving organizational growth.

Reporting Relationships

The Executive Director formally reports to the Chair of the Board of Directors and informally develops a strong positive working relationship with the Cincinnati-based Founder. Currently, the Executive Director will supervise a fractional grants administrator with the goal of increasing the staff FTE to support a highly functioning and robust organization.


Compensation + Benefits

The salary range for this position is $80,000 to $100,000, commensurate with experience.

The Executive Director will be the first full-time employee of The chILD Foundation, providing visionary leadership as the organization strengthens its programs, partnerships, and impact. capacity.
As part of this new leadership role, the Executive Director will collaborate with the Board of Directors to design and establish an employee benefits framework that reflects The chILD Foundation's commitment to care, equity, and family well-being. The Board is dedicated to supporting a healthy work–life balance and ensuring that the Executive Director has the benefits and resources necessary to succeed in advancing the Foundation's mission.

As such, a competitive benefits package is envisioned, including, but not limited to:

• Allowance for Medical, Dental, and/or Vision Insurance
• Starting allotment for vacation of 2 weeks.
• Eleven observed Federal holidays
• Professional development opportunities
• The Foundation will provide required equipment and supplies

As a reflection of our firm's commitment to equity and equal pay for all, Cooper Coleman requires that salary ranges or salary starting points be published for every search we conduct. The practice of not posting salaries perpetuates the gender and racial wage gap and discriminates against women, people of color, and other historically excluded populations by causing individuals to negotiate from a disadvantaged starting point.


Location + Expected Travel

While this position will be remote, the expectation for the successful candidate is to live near the greater southwest Ohio metropolitan area, as defined by a reasonable commuting distance to Cincinnati for work sessions and meetings with the Founder. The ED will also be expected to attend a variety of conferences, convenings, seminars, and advocacy events on behalf of the chILD Foundation.


EEO + Diversity, Equity, and Inclusion

Children's Interstitial and Diffused Lung Disease, Inc. is an Equal Opportunity Employer.

The chILD Foundation celebrates diversity and is committed to creating an inclusive environment for all employees. Candidates from historically underrepresented backgrounds are encouraged to apply. Research shows that members of overlooked, underserved, excluded, or marginalized communities self-select out of considering opportunities if they do not meet every single qualification. If you believe that you can meet the expectations of the position, yet your past experiences do not perfectly match every qualification in this job prospectus, you should consider applying.


Background Checks

Before sending your resume for this position, please read it over for accuracy. Cooper Coleman verifies its candidates' employment and academic credentials at the time of offer, and our clients frequently conduct comprehensive civil and criminal background checks before finalizing an offer.


Submission Instructions (read carefully)

Cooper Coleman is leading this search on behalf of the chILD Foundation. To apply, please visit this link (www.coopercoleman.com/current-searches). ALL expressions of interest should be made through the online application. Please send nominations of qualified candidates directly to

Kindly use the position title as the subject line of your email. All inquiries will be held in confidence.

A cover letter is not required with your initial application but is welcomed to help us understand your fitness for and interest in this role during our initial evaluation. Candidates invited for interviews will be asked to provide a thoughtful letter of interest indicating their specific qualifications for the opportunity, desire to join the chILD Foundation, and connection to its mission.

Cooper Coleman LLC is committed to providing equal employment opportunities to all qualified candidates and will refer candidates without regard to race, color, religion, national origin, sex, sexual orientation or identity, age, ability, veteran status, or any other legally protected basis.





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