The International Foundation for CDKL5 Research (IFCR) is seeking a full-time (remote) Executive Director to enhance our work for CDKL5 Deficiency Disorder (CDD). The Executive Director will work alongside our board of directors to lead the organization’s strategic plan so that we can continue our work moving CDKL5 forward towards a healthier future.
About CDD and the International Foundation for CDKL5 Research (IFCR)
CDD is a rare, developmental and epileptic encephalopathy. Hallmarks of the disorder include intractable epilepsy, cortical visual impairment, and profound neurodevelopmental disabilities. The International Foundation for CDKL5 Research (IFCR) is the leading patient advocacy group for CDKL5 Deficiency Disorder. Founded in 2009, the IFCR is an established nonprofit 501(c)(3) organization serving the global CDKL5 community of patients and families.
Mission & Vision
To treat and cure CDKL5 Deficiency Disorder by funding scientific research, while helping affected individuals and their families to thrive.
The IFCR is committed to funding research, both scientific and clinical, that will bring about treatments and, ultimately, a cure for CDKL5. We strive to raise awareness of this rare disorder within the medical and lay communities.
Above all, we seek to support all CDKL5 families and caregivers, whether newly diagnosed or well into adulthood, by providing the most current information on treatment advances and how to live their best life possible.
This is a fully remote position. The IFCR is incorporated in Wadsworth, Ohio, but our board of directors, Science Director, and clinical centers of excellence are spread throughout the United States. This position involves some travel.
About the Position
It is an exciting time for the IFCR as we enter our next phase. Our CDKL5 community is growing, and we need a seasoned leader to help our organization exceed our goals. We are in the process of updating our strategic plan and are looking to bring on an Executive Director to join us in this process.
The incoming Executive Director will find that the IFCR is made up of hardworking, dedicated, and passionate CDKL5 parent volunteer leaders, an experienced Science Director, and a strong Medical and Scientific Advisory. We have developed productive working relationships with key stakeholders in our space and are proud to lead the patient advocacy effort for CDD.
The Executive Director reports to the Board of Directors.
The Executive Director provides strategic leadership to the organization and oversees its day-to-day operations by fulfilling the following key responsibilities:
- Advance the IFCR’s mission by providing long-term strategic and day-to-day operational leadership of the organization under the direction of, and in collaboration with, the board of directors.
- Foster and develop positive working relationships with key stakeholders including CDKL5 families, clinicians and researchers, as well as industry partners.
- Partner with the Science Director to understand, shape, and help support our research roadmap agenda in order to achieve meaningful and measurable outcomes.
- Champion the sustainability of the organization through effective fundraising and donor relations, grants management, sponsorships, and other revenue.
- Create and manage our budget in support of strategic priorities and operational capacity.
- Oversee and evaluate programming, ensuring all are successful and in alignment with organizational goals and values.
- Partner with the communications team to develop relevant messaging and marketing efforts including newsletters, website, direct mail, and social media.
- Enhance, develop, and implement necessary business and governance policies to ensure compliance with applicable regulations and efficient, high-level organizational performance.
- Participate in monthly Board of Director meetings and present the Executive Director’s monthly report.
The ideal candidate for this position will be a visionary leader who believes in the IFCR’s mission and is passionate about serving the CDKL5 community.
- Bachelor’s degree recommended. Relevant experience required.
- Successful track record of effective leadership, preferably with non-profit organizations.
- Exceptional written, oral, interpersonal, and presentation skills.
- Experience with rare disease and/or drug development preferred.
- A desire to expand their knowledge about scientific research and the CDD landscape.
To apply, upload resume with cover letter here: https://www.dropbox.com/request/yWOMsAbbWu97oFdmrBoE