Location: Remote or Hybrid (if local in San Diego, CA)
Position Type: Part-Time
Organization Overview:
Our mission is to urgently improve the lives of individuals and families affected by KCNH1-Related Developmental and Epileptic Encephalopathy (an ultra-rare, neurological disorder caused by mutations in the KCNH1 gene) by accelerating research toward the development of effective treatments and a cure, building connections within the KCNH1 patient and professional community, raising awareness about KCNH1-related disorders, and advocating for the needs of families affected by rare diseases.
This is an exciting time to join our foundation as we leverage cutting-edge technologies to bring life-changing treatments to severely disabled patients and suffering families. We are currently poised to accelerate our mission, having recently received a transformational grant from the Chan Zuckerberg Initiative (CZI). As one of the rare-disease organizations selected to participate in CZI's prestigious Rare as One Network, our foundation will take part in an intensive five-year program, where CZI provides funding, training, community mentorship, and capacity-building resources to enable and scale a model in which patients, researchers, and clinicians work together to rapidly advance translational treatments for rare diseases.
Job Summary and Candidate Profile:
The Director of Development and Operations will play a critical role in executing fundraising initiatives, managing programs, and overseeing the day-to-day operations of the organization. This position requires a strategic thinker with strong leadership, communication, and operational management skills, as well as a passion for our mission. Working closely with the President, the Board, and a diverse set of stakeholders, this individual will ensure our organization meets its financial and operational goals in order to enhance our impact within the rare-disease space.
Does this describe you?
You are a highly skilled, dynamic, and entrepreneurial-minded leader who is eager to help reshape our foundation into a sustainable and scalable organization with enhanced capacity to effectively advance our mission as the KCNH1 patient/professional community grows. You are a passionate, motivated, and driven individual who has held leadership positions in other organizations, and you're now ready to assume a central one. You are someone who has a proven track-record in the development space and you are ready to create a successful, sustainable fundraising strategy for the Cure KCNH1 Foundation. With a strong financial and operational framework in place, you will use your vision, enthusiasm, and entrepreneurial spirit to grow the foundation by expanding our program offerings (primarily funding of research), broadening our international network of families and researchers, and helping to recruit and train the staff to meet these demands and perform the important work that needs to be done. As a leader in a small, startup organization, you are comfortable wearing many different hats, you enjoy learning new skills, and you are able to manage and organize a wide variety of projects.
If this sounds like you, then we can't wait to connect!
Key Responsibilities:
Development & Fundraising:
Develop, execute, and analyze comprehensive fundraising strategies to secure financial support from individuals, corporations, foundations, and grant-making organizations
Drive a donor-centric and mission-driven culture, building relationships and implementing best practices to achieve financial goals
Plan and oversee successful fundraising events, community-building initiatives, and online campaigns
Create marketing materials to promote fundraising initiatives
Manage donor database software, ensuring accurate record-keeping, gift processing, and reporting
Research and prepare grant applications and proposals
Develop partnerships with businesses, community groups, and other stakeholders to advance organizational objectives
Operations:
Oversee and implement core programs, including the funding and management of biomedical research projects, education and engagement of the patient/professional community (KCNH1 families, researchers, clinicians, industry representatives, and community partners), and execution of advocacy and awareness-raising initiatives
Lead the development and implementation of nonprofit best practices, including governance policies and compliance procedures
Ensure the overall effective management of the organization, providing hands-on management of the administrative and operational functions of the organization, and overseeing all resources in a competent and legal manner
Administer the annual budget, oversee day-to-day accounting operations, and the timely filing of taxes and ensure the timely filing of taxes and legal/financial documents to governing bodies
Develop and implement efficient systems for task tracking, scheduling, and workflow management; build out a project-management platform (preferably Asana) to organize and oversee programs
Manage the CZI grant program and Rare As One Network participation to ensure compliance with funding requirements
Participate in grant program meetings, board meetings, and scientific meetings
Build infrastructure to support organizational growth, including business systems and financial management tools
Assist in developing and cultivating a working Board, defining roles and responsibilities and establishing committees
Work closely with all stakeholders, maintaining regular communication to build strong relationships
Manage the International KCNH1 Patient Registry and utilize community engagement techniques to facilitate maximum participation
Support the planning and coordination of the biennial Cure KCNH1 Scientific and Family Conference
Develop and execute marketing and communication plans to promote programs and increase visibility and community engagement
Coordinate contractors and volunteers, ensuring program success and team effectiveness
Work with the President, Scientific Director, and outside subject matter experts to create content for education, engagement, and marketing for diverse audiences including caregivers, researchers, clinicians, and donors
Establish metrics and key performance indicators (KPIs) to measure the organization's impact and effectiveness
Attend occasional in-person conferences and events as needed
Qualifications & Skills:
Education: Bachelor's degree in nonprofit management, business administration, public health, or a related field.
Experience: 3-5 years of experience in nonprofit management and program development, preferably in the healthcare or scientific research sector. Understanding of nonprofit governance and compliance standards. Personal connection to rare-disease/special-needs/disability community ideal but not required.
Fundraising: Demonstrated success in securing major gifts, sponsorships, and grants.
Communication and Leadership: Exceptional written and verbal communication skills, with the ability to engage and motivate diverse stakeholders. Strong interpersonal skills and leadership capabilities, with knowledge of management principles and ability to collaborate effectively and problem-solve as part of a team.
Commitment to Operational Excellence: Outstanding organizational skills, and ability to effectively manage multiple priorities, tasks, and deadlines with precision. Track record of anticipating needs and staying ahead of tasks to facilitate a smooth, well-coordinated team environment.
Technology: Proficiency in CRM/donor-management and project-management platforms, Google Suite, Canva, and Zoom.
Working Conditions, Compensation, & Application Process:
This position offers remote work flexibility, with occasional travel for events and conferences.
Availability for occasional evening and weekend activities as required by program and fundraising initiatives.
Compensation negotiable, commensurate with experience.
Interested candidates should submit a resume, cover letter, and three professional references to Michaelle Jinnette at info@curekcnh1.org.
Our organization is an equal opportunity employer and encourages candidates from diverse backgrounds to apply.
Join us in making a meaningful impact for individuals and families affected by rare neurological disorders. We look forward to welcoming a dynamic leader to our team!