In March of 2003, it was established that a mutation of the PHOX2B gene was the primary cause of CCHS. This was a groundbreaking finding for researchers, clinicians, and most importantly, patients living without explanation of their extremely rare diagnosis. With the subsequent development of a mouse model, much is being learned about the genetic intricacies of CCHS.

Eligibility Criteria

Applicants must have a doctoral degree (including PhD, MD, DO, DC, ND, DDS, DVM, ScD, DNS, PharmD, or equivalent doctoral degree) in a related field and have a faculty appointment or equivalent with demonstrated institutional commitment to the Principal Investigator (research lab space, clinical studies support, etc). Junior faculty, post-doctoral fellows and residents are also eligible, provided a mentoring team is designated with strong letter of support.

Research Focus Areas

Focus areas include investigations related to the CCHS young adult population, development of innovative technology or treatment modalities, and basic/translational research in CCHS biology. Inquiries are encouraged to vet clinical and translational research proposal with the CCHS Network.

Review Process

Applications are peer-reviewed by the CCHS Research Advisory Board (RAB) comprised of researchers and physicians respected for their accomplishments and expertise in the care of CCHS patients and the biology of CCHS. Also on the RAB are parents and family members of CCHS patients who are have a medical or scientific background.

The following review criteria will be used when reviewing applications and determining funding decisions:

  • Investigator(s)
    • What training and experience does the applicant and the research team have to ensure successful implementation of the proposed research?
    • Track record and productivity of the investigative team will also be assessed.
  • Significance
    • Will the proposed work make a significant impact in the understanding, treatment, or care of CCHS patients?
    • What potential will the research have to advance the field of CCHS research?
  • Approach
    • Are the overall strategy, experimental design, and methodology well-reasoned and appropriate to achieve the proposed specific aims of the project within the grant term?
    • Are potential problems and alternative strategies described?
    • Benchmarks and metrics of success presented?
    • Is the budget fully justified for the proposed project?
  • Institutional Environment
    • What is the institutional resources (equipment, core facilities, support, collaborators) are available to the applicant and are they adequate to facilitate and successfully complete the proposed project?

Program Inquiries

For application information, policies and procedures, and general information, please email the RAB Chair at

Research Advisory Board Members

CCHS grants are reviewed by the Research Advisory Board using an NIH-based protocol. Board members are CCHS professional experts and family members with science and medical backgrounds
  • Eddy Yang, M.D./Ph.D., Chair
  • Linda Dokas, Ph.D., Vice-chair
  • Jason Burbach, M.S., Aerospace Engineer
  • Maida Chen, M.D., CCHS Specialist
  • Ajay Kasi, M.D., CCHS Specialist
  • Sheila Kun, MS Nursing, CCHS Specialist
  • Melinda Riccitelli, Ph.D., Ex officio, President, CCHS Network