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A Call to Action

The National Institute of Child Health and Development (NICHD) is the government agency responsible for research on the problem of sudden unexplained deaths in infants and children.

Historically, the NICDH supported the development of the Triple Risk hypothesis, brainstem serotonin research, epilepsy-related findings in SIDS and SUDC, research on the role of cardiac channelopathies and metabolic defects in SIDS, the dissemination and study of Safe Sleep efforts, and ongoing surveillance specific to the area of unexplained child mortality.

The NICHD was mandated by Congress in 1974 to prioritize and provide leadership in this area: there is no other agency that has been explicitly directed by the government to oversee medical efforts for SIDS and SUDC. SIDS and SUDC, which we together call Sudden Unexpected Death in Pediatrics (SUDP) account for a high percentage of U.S. infant and child mortality.


The NICHD has just released a draft of its 5-year strategic plan to guide the research it will support from 2020-2024. In a shocking change, the six areas of focus in the strategic plan make no mention of SIDS/SUID research or its risk reduction interventions. While some of the stated areas of priority may vaguely apply to SUDP, the message of the document is that since SUDP is not an explicit priority for NICHD funding, we will have to justify that SIDS and SUDC are worthy of research. The failure to target SIDS, which is responsible for more deaths than pediatric cancer, threatens to be a big step backwards in our efforts to eliminate SUDP. It says that the problem is not a priority.


The NICHD has asked for public responses to their 2020-2024 funding priorities. I am asking you to respond to their Request for Information (RFI). The purpose of the RFI is to solicit feedback on the scientific themes, goals, and opportunities under consideration for the new NICHD strategic plan. You can find it at:

This marks the first time since the SIDS Act of 1974 that the NICHD does not claim a specific responsibility for SIDS.


The comment period closes on February 15, 2019I am asking that you send in your comment and call your Congressperson today. For Sloan. For all the babies taken by SIDS and SUIDS. Help us, their families, be heard. Help keep your own little ones safe. Help us continue to make a difference.


How to Submit a Comment: Responses should be submitted via email to no later than Friday, February 15, 2019Please indicate “RFI Response” in the subject line of the email.

3 thoughts on “A Call to Action Leave a comment

  1. I’ll be in touch with my my Congressional representative tomorrow.
    Thank you.
    I recently found out about the “Count the kicks” public health campaign and how that research relates to SIDS.
    I lost my Laila 10 years ago. I would have given anything for the information they have now for new Mothers. The research is important.

    Liked by 1 person

  2. Why do you think they made this change and it isn’t a priority anymore? I would like to email them and let them know it needs to be included, is there something more specific that we should say?


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