CHI is hiring! CHI has a small, dynamic, and dedicated staff that accelerates research towards better treatments and a cure, advocates for timely diagnosis and improved standards of care, and supports families and people living with HI around the world.
We are seeking two integral team members to join our staff. Please find the job descriptions for the Development Manager and the Research Manager.
If you are interested in either of these positions, please email a cover letter and resume to jobs@congenitalhi.org by May 29, 2024.
Development Manager
Nonprofit Overview: Congenital Hyperinsulinism International (CHI) is the leading globally focused organization dedicated to improving the lives of babies and children with congenital hyperinsulinism (HI). HI is a life-threatening disorder that causes dangerously low blood sugar levels due to the over-production of insulin. Prolonged or severe low blood sugar can cause seizures, brain damage, and even death.
CHI has a small, dynamic, and dedicated staff that accelerates research towards better treatments and a cure, advocates for timely diagnosis and improved standards of care, and supports families and people living with HI around the world. CHI programs encompass a wide range of initiatives aimed at advancing research, fostering collaboration, and advocating for global access to treatments and medications. These initiatives include hosting international family conferences, implementing the Center of Excellence Designation Program, facilitating the Collaborative Research Network to unite hyperinsulinism experts worldwide, supporting the University of Exeter Hyperinsulinism Genes Program, and advocating for increased access to treatments and medications on a global scale.
Position Title: Development Manager
Position Reports to: Chief Executive Officer
Affiliations: CHI Staff, Board Members, Consultants, Representative Patients and Patient Families, CHI Community Volunteers, and Others at the Direction of the CEO.
Ideally, the Development Manager thrives as part of a dynamic, hardworking, and collaborative team. They demonstrate personal responsibility, ensuring accountability for their work and consistently meeting deadlines. Additionally, they have proven themselves capable of working collaboratively in a virtual setting with tools like Microsoft Teams, SharePoint, and Planner while also being able to work independently, whenever necessary, without the need for constant supervision. They are also comfortable and thrive at being a part of fundraising events, research symposiums or family conferences with work hours that may occasionally include evening events and weekday or weekend travel.
The full-time remote position requires a suitable home office equipped for virtual work and online meetings. The position also involves some travel to domestic and international locations for meetings and conferences to meet with senior staff, as well as travel to meet current and prospective donors. Preference will be given to individuals in Northern NJ, NYC, Western MA, and the DC Metro area, but applicants from all U.S. based geographic locations will be considered.
The Development Manager will work to fulfill the mission, vision, and priority goals of Congenital Hyperinsulinism International (CHI) by honing, implementing, and stewarding the organization’s fundraising initiatives to secure funding for the organization’s work.
The position is a full-time or regular part-time position requiring a suitable home office equipped with proper equipment and technology for virtual work and online meetings. The position also involves some travel to domestic and international locations for meetings and conferences to meet with senior staff as well as travel to meet current and prospective donors.
Specifically, the Director of Development will:
Planning
- Implement the CHI fundraising plan.
- Work with the full CHI team to build, expand, and improve public relations and promotional plans and platforms to increase awareness of CHI’s work and opportunities to improve the lives of people with HI.
Donor Research
- Conduct ongoing research on current and prospective donors (individuals, foundations, corporations and other organizations) with an end goal to acquire major gifts from new donors, and to renew and upgrade gifts from current donors.
- Lead processes to identify new donors to the organization through current and newly established networks.
Board Development
- Support strategic research to support the CEO, the COO and the board to identify new board members who can help with ongoing major gift development.
Foundation and Government Relations:
- Determine the best foundation partners and design all processes to help close commitments, from preparing letters of inquiry (LOIs) to formal proposals and ongoing personal interactions with foundation leaders and their board members.
- Assist the CEO in identifying any appropriate government grants that accelerate the CHI mission.
- Prepare relevant materials for foundation proposals and or government grants and coordinate input from experts, i.e. Scientists, researchers, partners etc.
- Track results from proposals and grants received and send grantors regular impact reports and communication to keep them engaged and supportive.
Donor Stewardship, Cultivation and Solicitation:
- Work collaboratively with the CEO and board members to cultivate donors and prospective donors in a manner which is highly personal and relevant to each donor.
- Conduct face-to-face and/or phone and online communication with such donors on a regular basis.
- Help create and continuously refine “board portfolios” with assigned donors, then track and manage actions needed from the CEO, each board member and any other appropriate staff and volunteers to ensure their success in their personal management of their portfolios—Supply them with all needed materials and instructions to be effective.
- Position the CEO, key staff, and board members for effective interactions with all high-level donors and prospective donors.
- Write correspondence to donors as needed between interactions with the team.
- Maintain donor contact reports and integrate them into the CRM system.
- Prepare personal proposals for specific asks to individual donors.
- Assist the full CHI team in designing and implementing creative ways to keep donors informed of the results and impact of their giving through personal and collective donor acknowledgment activities.
- Oversee all donors are properly thanked and acknowledged in a timely manner.
Planned Giving
- Help the CEO and CHI Senior Staff to design, implement and incrementally build a planned giving program.
Fundraising/visibility Events:
- Assist the full team with the design, , management and implementation of special events, small and large to build awareness and or raise money for CHI.
Ongoing Education:
- Attend any relevant training and or coaching sessions at the request of the CEO.
- Participate in research conferences at the request of the CEO.
- Take initiative to interact with any organizational consultants in fundraising and or public relations.
Other:
- From time-to-time there will be other responsibilities required to assist in all aspects of fundraising, relationship development and organizational promotion.
QUALIFICATIONS:
Experience:
- Has worked in a development position in nonprofit sector with a focus on major gifts or have excellent writing and research skills, and experience in sales or public relations (PR).
- Has been effective in motivating and supporting a board of trustees in partnership with the organization’s CEO/ED or has the skills and personality to be a natural at this.
- In addition to major gifts, has either provided oversite to or directly managed all areas of development including foundation and corporate relations, individual giving at all levels, donor research, constituent management, events and public relations to support fundraising or be a self-starter who can flourish managing these aspects of the job.
- Has personally helped to close gifts at the $25K level and higher or has applicable sales or PR experience.
- Has personally identified new individual donors to an organization via new networks has applicable sales or PR experience.
- Track record of initiating “first approach” calls to new foundations, corporations and/or individual donors or applicable sales or PR experience.
- Proven track record for cultivating and advancing relationships with existing donors or applicable sales or PR experience.
Skills:
- Persuasive and excellent written and oral communication skills
- Superior interpersonal skills
- Ability to sell the organization’s vision with passion
- Strong project management and organizational skills
Personal Qualities and Attributes:
- Self-starter/leader
- Team player
- Ability to work in an entrepreneurial environment with a small team needing to work many hours during certain work cycles and donor events.
- Takes initiative in bringing ideas for finding and cultivating new donors.
- Not afraid to make cold calls and form relationships by phone, Zoom and other tools which connect people across geographic areas.
- Takes personal responsibility/accountability for work and meets deadlines.
- Ability to work independently (virtually) without supervision.
Full-time employees at Congenital Hyperinsulinism International are offered paid time off, health benefits, and 401K Matching.
CHI is an Equal Opportunity Employer. We respect and seek to empower each individual and support the diverse cultures, perspectives, skills and experiences within our workforce.
Research Manager
Nonprofit Overview: Congenital Hyperinsulinism International (CHI) is a non-profit dedicated to improving the lives of children with a rare disease, congenital hyperinsulinism (HI). HI is a life-threatening disorder that causes dangerously low blood sugar levels due to the over-production of insulin. Prolonged or severe low blood sugar can cause seizures, brain damage, and even death. Despite being a rare disease, CHI has created a vibrant and active community of researchers, clinicians, and patient and caregiver advocates who work together to solve the most pressing issues for individuals living with HI worldwide. CHI is dedicated to family support, awareness, and research towards better treatments and a cure.
Position Summary: The Research Manager is an integral member of the Research and Policy Department. They are responsible for participating in the research, planning, data collection, execution, and analysis associated with the CHI research portfolio. Additionally, the Research Manager will work closely with CHI staff and volunteer committee members as they help execute key projects including the HI Global Registry (HIGR), the Centers of Excellence Program (COE), the Collaborative Research Network (CRN), and global access programs. The Research Manager will be required to support key research and advocacy projects and, with training, will then have the opportunity to lead their own smaller projects or components of larger initiatives. CHI Research Manager will report to the Chief Research Officer.
Location: The CHI Research Manager will work remotely from home with occasional travel within the US and internationally. Preference will be given to individuals in Northern NJ, NYC, Western MA, and the DC Metro area, but applicants from all U.S. based geographic locations will be considered.
Responsibilities:
- Complete the NIH Human Subjects Research training to learn about ethical research best practices.
- Support CHI’s research programs including qualitative and mixed-methods initiatives by researching methodology, drafting protocol and informed consent documentation, generating planning documents, implementing timelines, participating in data collection, and conducting data analysis.
Grow the international drug access program, overseeing initiatives aimed at improving access to medications for individuals affected by HI. - Contribute to data analysis, protocol development, and research projects for the collaborative research network and the CHI research program.
- Support publication development by assisting with literature reviews, data analysis, and manuscript preparation.
- Assist with data curation, including organizing data from the HI Global Registry and conducting outreach to ensure data accuracy.
- Contribute to conferences by assisting in topic development, writing abstracts, preparing data, slide decks, and posters, and giving poster/oral presentations.
- Support projects associated with the collaborative research network including providing project management support.
- Create surveys, forms, and applications using Submittable, SurveyMonkey, or other software to support research, the Centers of Excellence Program, and other programs as needed.
Contribute to the program execution and evaluation for the Centers of Excellence Program. - Support CHI’s policy and advocacy campaigns through research and creating documentation for initiatives, including drug access and insurance policies.
- Assist in identifying grant funding that may support CHI’s research and policy programs.
Develop ongoing advocacy and awareness projects and help launch new projects to increase public awareness of CHI. - Contribute to social media content related to research and policy department initiatives and partner updates across Facebook, Instagram, Twitter, LinkedIn, and others.
- Help the CHI staff plan and execute major events, including conferences and fundraising events (virtual and in-person).
- Support CHI Staff as needed and assist with other projects as assigned based on CHI priorities.
Requirements/qualifications:
- A bachelor’s or master’s degree in public health, communications, public affairs, policy, genetics, health sciences, or another relevant degree and/or experience.
- Strong interest in HI, rare diseases, research, genetics, medicine, policy, or advocacy.
Familiarity with the HI or rare disease patient experience or a willingness to learn relevant medical terminology. - Ability to work collaboratively with individuals in a remote work environment.
- Ability to participate in occasional domestic and international work trips.
- Capacity to adapt to a dynamic work environment.
- Strong self-guided work habits and ability to track multiple simultaneous projects.
- Excellent knowledge of Microsoft Word, Excel, and PowerPoint.
- Good verbal and written communication skills.
- A positive attitude and enthusiasm for learning new skills, terminology, and concepts.
Full-time employees at Congenital Hyperinsulinism International receive paid time off, health benefits, and 401K matching.
CHI is an Equal Opportunity Employer. We respect and seek to empower each individual and support the diverse cultures, perspectives, skills and experiences within our workforce.
