CCHS Foundation Program Development Associate Application

The CCHS Foundation is seeking a highly motivated and resourceful individual with a passion for non-profit fundraising and rare diseases to join our evolving team.  Our organization has operated through the hard work of family volunteers for the past 29 years.  We are thrilled to take this monumental step in hiring our first professional staff member to drive our mission and improve the lives of the ~1,200 individuals living with congenital central hypoventilation syndrome (CCHS).

To learn more about CCHS as well as the CCHS Family Network and CCHS Foundation, visit

This part-time position will work remotely and report directly to our leadership in California and New Jersey.

Duties and Responsibilities

  • Build relationships with current donors and share enthusiasm for our mission.
  • Conduct research on current donors and potential prospects, including individual donors, corporations and foundations.
  • Research, write and submit grant proposals.
  • Record donations and manage the donor registry.
  • Track fundraising progress and prepare quarterly and annual reports.
  • Produce timely administration of donor acknowledgement letters.
  • Assist with the coordination and promotion of special events, webinars and conferences.
  • Receive and prioritize all email and phone correspondence, maintain a communication log, and consult Board members as needed.
  • Manage social media accounts and generate new outreach initiatives.
  • Facilitate and participate on monthly CCHS Foundation Board conference calls.

Minimum Qualifications

  • Bachelor’s degree preferred in social services, education or other related field.
  • Prior non-profit experience is preferred.
  • Computer literate and technologically proficient in standard word processing, spreadsheets and database software applications.
  • Experience in building and managing social media platforms.
  • Experience in grant research and writing.
  • Special event experience in coordination and promotion.
  • Excellent written and verbal communication skills.
  • Ability to work autonomously and translate expectations into measurable outcomes.
  • Enthusiasm to learn about congenital central hypoventilation syndrome (CCHS) and serve as an advocate for the rare disease community.


  • Part-time position averaging 20 hours per week; potential for growth contingent on achievement of fundraising goals.
  • Employee will serve as a 1099 contractor.
  • Salary range of $25-35 per hour; dependent on experience and skill level.
  • Work to be performed remotely with intermittent travel to meet with leadership.
  • Flexible work hours; phone correspondence to occur during traditional work hours of 9:00 a.m. to 5:00 p.m. ET.
  • Periodic night-time hours required, including board conference calls which occur monthly at 9:00 p.m. ET.
  • Work hours to be logged and submitted to the CCHS Foundation Chairperson(s) on a bi-weekly basis.


To apply for this position you must:

  1. Complete the application form below
  2. Upload a one-page Cover Letter to include (as applicable):
    • Fundraising experience
    • Information about developing a fundraising program
    • Experience with rare disease
    • Ability to work as part of a team
    • Experience with fundraising platforms
    • Experience with social media development and management
  3. Upload a resume
  4. Provide name, email, and telephone number of 2 people willing to be a reference for you. References will be contacted for final candidates
  5. Submit 2 recent and confidential letters of recommendation. Please have letters sent to
  6. Final candidates will provide college transcript(s) to ensure minimum qualifications

Cover Letter and Resume

After submitting your profile, please complete your application by emailing a cover letter and resume to
Consolidated applications will then be reviewed by the hiring committee.