Draft:End Sepsis

End Sepsis is a nonprofit organization focused on preventing unnecessary deaths and serious illness caused by sepsis through public awareness campaigns, comprehensive sepsis education for adults and children, and advocacy for implementation of nationwide and global sepsis protocols for the fast identification and treatment of sepsis.

Originally called The Rory Staunton Foundation for Sepsis Prevention, the organization was founded in New York in 2012 by Ciarán and Orlaith Staunton after their 12-year-old son Rory Staunton died from undiagnosed sepsis.

The organization is affiliated with the Global Sepsis Alliance, where Ciarán is a board member.:

End Sepsis is a not-for-profit organization, with 501(c) (3) tax-exempt status in the United States.

Rory Staunton's death

On Wednesday, March 28, 2012, 12-year-old Rory scraped his arm during a basketball game during gym class at his school, Garden School in Jackson Heights, Queens, New York. The gym teacher covered Rory's wound without washing it and did not send him to the school nurse.

After midnight that night, Rory woke up at home vomiting and with a pain in his leg. The following morning, he had a fever of 104 and continued complaining about pain in his leg. His parents, who were worried that the over-the-counter medication commonly used wasn't bringing their son's temperature down, called the family pediatrician, Dr. Susan Levitzky.

Dr. Levitzky saw Rory that evening. She took his vital signs and noted his mottled skin, the pain in his leg, and his tender stomach. She diagnosed him with gastric flu and referred him to the emergency room for rehydration and fluids.

In the emergency room at NYU Langone in New York City, the doctors concurred that Rory had a stomach virus and was dehydrated. Rory was given two bags of intravenous fluids, had three vials of blood drawn, and was given a prescription for Zofran. Before he was discharged, the pediatrician at the hospital who examined Rory wrote "patient improved" on his chart. The doctor said Rory had a stomach virus and that he could take up to a week to recover.

Rory returned home with his parents that night, but the following morning, he continued to complain about pain and his temperature continued to be high. Not convinced of the stomach virus diagnosis, Ciarán and Orlaith again called Dr. Levitzky, who told them not to worry about the temerature and instead focus on getting food into Rory, which they found near impossible.

That night, after seeing Rory's skin turn blue/black and his face begin to turn yellow, Ciarán and Orlaith brought their son back to the emergency room at NYU Langone.This time, he was admitted to the intensive care unit (ICU). Rory was in severe septic shock and organ failure.

On Sunday evening, April 1, 2012, Rory Staunton died of sepsis at NYU Langone.

An investigation by the New York State Department of Health into the death of Rory Staunton revealed that his treatment at NYU Langone Emergency Room did not meet the basic standards of care. The investigation was completed in 2012 and made public in 2014.

Following Rory's death, his parents mounted a campaign to improve sepsis protocols and awareness and founded The Rory Staunton Foundation for Sepsis Prevention, which later became End Sepsis.

Initiatives

U.S. Senate hearings on sepsis

Initiated by Ciarán and Orlaith Staunton, the first U.S. Senate Hearings on Sepsis were held in September 2013. Testifying before the Senate Committee on Health, Education, Labor and Pensions (HELP), Ciarán stated

"We are calling on Congress to institute a federal nationwide program of education on early detection of sepsis with similar standards in all fifty states. We are also calling on Congress to create a comprehensive educational resource so that doctors, nurses and, yes, parents and patients can include sepsis as a possible diagnosis when a patient shows up in an emergency room with similar symptoms to Rory."

The National Forum on Sepsis

Beginning in September 2013, the Rory Staunton Foundation hosted the National Forum on Sepsis in Washington, D.C., bringing together leaders from healthcare policy, government, critical care, patient advocacy and private industry to to focus on the sepsis crisis for the first time. Subsequent forums have been hosted each year, including virtually in 2020.

National Family Council on Sepsis / Sepsis Families United

In September 2015, the Foundation announced the formation of the National Family Council on Sepsis, now called Sepsis Families United. The group is a community of sepsis survivors, families that have lost a loved one to sepsis, and allied individuals concerned about the toll that sepsis is taking on families, the healthcare system, and the U.S. national budget.

from sepsis. Members work alongside End Sepsis to advocate for the adoption of improved sepsis policies, increase awareness of the condition, raise funds and support grieving families and sepsis survivors on the long road to rehabilitation.

Sepsis Education Module

Also in September 2015, the Foundation launched its sepsis education module, the first of its kind. Lesson plans were developed by End Sepsis, educator Ann Smith, and the American Federation of Teachers (AFT). Sepsis prevention resources are now available via the Share My Lesson platform.

Maternal Sepsis Campaign

Maternal sepsis is the third leading cause of pregnancy-related death in the U.S. In 2019, End Sepsis was awarded a contract by the Department of Health and Human Services' BARDA DRIVe program to develop an initiative to address the maternal sepsis crisis. The work has resulted in the development of educational resources for women's health providers and in the End Maternal Sepsis campaign to educate pregnant people on the condition and its risk factors.

The SEPSIS Act

The SEPSIS Act (Securing Enhanced Programs, Systems, and Initiatives for Sepsis Act) was introduced in the U.S. Senate on September 13, 2024, World Sepsis Day.

It was reintroduced in the Senate in June 2025 by Majority Leader Chuck Schumer (D-NY), with Senator Susan Collins (R-ME), and Senator Andy Kim (D-NJ) as co-sponsors. Senator Christopher Murphy (D-CT), Senator Amy Klobuchar (D-MN), and Senator Jim Banks (R-IN) have since signed on as co-sponsors.

It was introduced in the House of Representatives in January 2026 by Representatives Donald Norcross (D-NJ) and Thomas Kean (R-NJ). Rep. Josh Gottheimer (D-NJ-5) and Delegate Eleanor Holmes Norton (D-DC-At Large) have since signed on as co-sponsors.

The legislation aims to prevent sepsis fatalities by increasing early recognition, diagnosis, and treatment of sepsis.

It is endorsed by the American Hospital Association, Federation of American Hospitals, Infectious Diseases Society of America, Pediatric Infectious Diseases Society, Society for Healthcare Epidemiology of America, New Jersey Hospital Association, and the Sepsis Alliance.

Achievements

Rory's Regulations

In January 2013, Rory's Regulations were signed into law in New York, requiring every hospital in the state to develop protocols designed to improve rapid identification and treatment of sepsis.

The protocols must provide for:

• The screening and early recognition of patients with sepsis, severe sepsis, and septic shock
• A process to identify and document individuals appropriate for treatment through severe sepsis protocols
• Guidelines for treatment, including the early delivery of antibiotics
• Suitable training, resources, and equipment for healthcare providers for quickly recognizing and treating sepsis in adults and children
• The reporting of all sepsis-related data to the New York State Department of Health for use in monitoring compliance and updating best practices

With Rory's Regulations, New York became the first state in the US to establish a statewide mandate requiring all hospitals to adopt sepsis protocols. A 2018 study credited Rory's Regulations with a measurable reduction in sepsis deaths.

In August 2016, Illinois passed Gabby's Law (SB 2403), modeled after Rory's Regulations in New York.

In January 2018, the New Jersey Health Care Administration Board approved N.J.A.C. 8:43G-14.9, "Sepsis protocols", also modeled after Rory's Regulations.

In January 2023, Rhode Island Governor Dan McKee signed into law 2023-S 0283A, 2023-H 5869A, modeled after Rory's Regulations. It requires the director of the Department of Health to develop in coordination with the Antimicrobial Stewardship and Environmental Cleaning Task Force information on best practices for the treatment of patients with sepsis and septic shock.

Enacted in 2019, Indiana House Bill 1275, also known as 'Josslyn's Law,' mandates that Indiana hospitals implement evidence-based sepsis screening and treatment protocols to improve early detection and survival rates. Inspired by the death of 18-month-old Josslyn Gee, it aims to standardize care for rapid intervention.

Parents' Bill of Rights (New York)

Described as 'part two' of Rory's Regulations, the Parents' Bill of Rights came into effect in New York in December 2013. It ensures that parents and primary care providers receive vital information about children's care, particularly by facilitating the communication of key tests and lab results.

World Health Assembly resolution

In 2013, Ciarán Staunton attended the 70th World Health Assembly, the decision-making body of the World Health Organization (WHO), where he spoke in support of resolution WHA70.7, "Improving the prevention, diagnosis and clinical management of sepsis". The resolution passed unanimously.

CDC and sepsis

In May 2014, upon the recommendation of the Rory Staunton Foundation, the CDC launched a sepsis section on its website to educate the public about sepsis.

In August 2023, with direct assistance from End Sepsis, the CDC launched the Hospital Sepsis Program Core Elements, outlining structural and procedural components that are associated with the multidisciplinary expertise required to support the care of patients with sepsis.

Rory Staunton's Law

In 2017, End Sepsis succesfully advocated for the passage of Rory's Staunton's Law in the state of New York, which provides comprehensive K-12 sepsis education for school children and requires healthcare professionals to complete mandatory sepsis training.

National Sepsis Day

In 2022, at the request of End Sepsis, Senator Chuck Schumer proclaimed September 13 National Sepsis Awareness Day on the floor of the US Senate. He dedicated his work to Rory Staunton.

Sepsis in the national budget

In December 2022, for the first time, sepsis funding and directives were included in the federal budget. The two provisions relating to sepsis in the FY23 Omnibus Spending Bill were:

• The allocation of significant funding to the Agency for Healthcare Research and Quality (AHRQ) for sepsis research
• The requirement that CMS, in collaboration with CDC, develop or identify "existing quality measures for adult and pediatric sepsis that could be implemented through notice and comment rulemaking".

In March 2024, $3 million was allocated to the Centers for Disease Controls (CDC) to address sepsis as part of the FY24 Congressional Budget.

Congressional funding again increased In February 2026, when the budget signed into law included $5 million for the CDC to expand its sepsis programs.

CDC issues sepsis guidelines for hospitals

In August 2023, following advocacy from End Sepsis, the CDC released its Hospital Sepsis Program Core Elements, which include:

• Hospital Leadership Commitment: Dedicating the necessary human, financial, and information technology resources.
• Accountability: Appointing a leader or co-leaders responsible for program goals and outcomes.
• Multi-professional expertise: Engaging key partners throughout the hospital and healthcare system.
• Action: Implementing structures and processes to improve the identification of management of, and recovery from sepsis.
• Tracking: Measuring sepsis epidemiology, management, and outcomes to assess the impact of sepsis initiatives and progress toward program goals.
• Reporting: Providing information on sepsis management and outcomes to relevant partners.
• Education: Providing sepsis education to healthcare professionals, patients, and family/caregivers.

Awards and recognitions

In 2016, End Sepsis received a Special Award from the Global Sepsis Alliance

That same year, L'Oréal Paris named Orlaith Staunton as a 'Women of Worth,' a recognition that honors "extraordinary women who selflessly volunteer their time to serve their communities".

In 2022, Ciarán and Orlaith Staunton were honored with the Irish Presidential Distinguished Service Award in the field of Charitable Works for their work with End Sepsis.

The Stauntons were included in Irish America Magazine's 2022 edition of Healthcare and Life Sciences 50 for their work with End Sepsis.

Funding

End Sepsis is primarily funded through donations from individuals and foundations.

External links

• Official website
• Sepsis Families United
• sepsis education module
• Share My Lesson platform
• Department of Health and Human Services' BARDA DRIVe
• End Maternal Sepsis campaign
• Infectious Diseases Society of America, Pediatric Infectious Diseases Society, Society for Healthcare Epidemiology of America
• Rory's Regulations, New York state
• N.J.A.C. 8:43G-14.9, New Jersey
• Parents' Bill of Rights
• Sepsis, CDC
• Hospital Sepsis Program Core Elements, CDC