WE ARE HIRING A DEVELOPMENT DIRECTOR

Who Are We?

The CCHS Network, Inc. is a 501(c)(3) organization, founded in 1989 by Mary Vanderlaan to raise awareness of Congenital Central Hypoventilation Syndrome (CCHS). She created the non-profit after her infant son was diagnosed with this extremely rare, life-threatening disease. Mary saw the great need to connect and support CCHS families in order to address patient isolation, limited disease information and stunted research. The CCHS Foundation was established in 2015 as the formal fundraising arm of the Network and has raised over $2.5 million dollars to date. Private and corporate donations have allowed for the delivery of annual research grants (75% of raised funds), educational outreach (25% of raised funds) and family support via conference and durable medical equipment scholarships (5% of raised funds).

In 2019, after years of tireless leadership, Mary Vanderlaan retired as Network President and was succeeded by Melinda Riccitelli. Melinda previously served as Vice-President and is a fellow CCHS parent. Since that time, she and the Executive Board have taken purposeful steps to invigorate the organization’s evolution and impact. The CCHS Network has relied on volunteers and donors to achieve its mission for over three decades and is now primed for employment opportunities.  

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. www.cchsnetwork.org


Our Mission

The CCHS Network has a multi-focused mission of education and support of families and patients, inter-family and family-physician communication and supporting and facilitating CCHS research.


What We Need

A development audit was performed in 2019 by Blueprint Fundraising which led to a detailed five-year plan. A primary recommendation was to hire staffing to formalize operations and shift day-to-day activities to dedicated personnel. This approach would generate improved oversight, succession planning, accountability and Board productivity. 

The initial step of this multi-staged endeavor is to hire a part-time Development Director responsible for strategic fundraising, grant writing, donor relations and working with the Board. Clearly defined roles and responsibilities between the Executive committee and Director will encourage focus and accountability.


What You Will Need

We understand that there is no specific template to ensure fundraising success and such skills are highly personalized. The following criteria serve as the framework of expectation and responsibility. We anticipate a cooperative, collaborative and dynamic exchange that will only add to the value of this position. 

  • A passion for the organization’s mission focusing on individuals and families impacted by a rare disease.
  • 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. 

Other Things to Know About the Development Director Position:

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).
  • Engagement in social media efforts. 

The Job

The CCHS Network is hiring a Development Director. This is an important and exciting step towards fortifying its administrative structure, growing donor relations, generating greater revenue and ensuring its continuity and impact in years to come. We are looking for an experienced professional eager to apply their skills to this new position and worthy cause. The legacy of the Development Director will center on increased funding for research grants that will ultimately change the fate of those affected by CCHS. If you are looking for client work and prefer flexibility, we encourage you to apply for this position.   

Please send your resume along with a cover letter of introduction to Barbara H McColm @ jobs.cchsnetwork@gmail.com.