Development Director

• A Bachelor's degree + 3 to 5-years of experience in development and fundraising management
• A passion for the organization’s mission focusing on individuals and families impacted by a rare disease.
• Experience in fundraising across multiple states.
• The ability to become conversant in and speak compellingly about the specifics of CCHS and the organization’s mission to build donor enthusiasm.
• The ability to communicate effectively and respectfully with philanthropists, donors, grant institutions and families.
• Writing skills that can fully capture the importance of this work and aid in grant procurement.
• A diligent, flexible and self-managed work style that allows for efficient job execution while working with leadership across time zones.
• The understanding of the Donor Bill of Rights provided by the Association of Fundraising Professionals.
• An interest in identifying new funding sources offered by foundations, corporations and philanthropists focused on research and health.
• The desire to work part-time, twenty hours per week in a virtual setting. A contract arrangement is preferred with 90-day review of work.  Predetermined business expenses will be reimbursed.

The volunteer Executive Board plans to integrate several weekly/monthly obligations into this position.  Those items include:

• Donation entry into the Little Green Light database and timely donor acknowledgement letters.
• Administrative support to the Board President during quarterly board calls (i.e. meeting minutes).
• Creation and maintenance of a grants calendar for submissions and reporting cycles to maximize donations.
• Involvement in the creation, preparation and execution of annual CCHS Day activities, which serves as the biggest fundraising event of the year (second Saturday of November).
• Involvement in the preparation of annual report.
• Engagement in social media efforts.

(The CCHS Network, Inc. is a 501(c)(3) rare disease organization, founded in 1989 by Mary Vanderlaan to raise awareness of Congenital Central Hypoventilation Syndrome (CCHS). CCHS is a complex genetic disorder that is typically diagnosed at birth. It affects the autonomic nervous system, most dramatically the ability to breath involuntarily during sleep, along with many other multi-system complications. While a small percentage of cases are inherited, most result from a “spontaneous” gene mutation leaving parents desperate for answers and options. Unfortunately, CCHS is poorly recognized and understood, trained medical facilities are sparse and families are geographically scattered given its rarity (affecting an approximate 1500 individuals worldwide). There is currently no cure or even medication for CCHS. Most children receive tracheostomies at just several months of age. While those affected have the potential to live long and productive lives, they are currently required to rely on life-long mechanical ventilation. Go to www.cchsnetwork.org for more information)