Hope From John Ellis

Hope From John Ellis exists to raise awareness of Intrahepatic Cholestasis of Pregnancy, advance maternal and liver health education, and surround grieving families with compassion, remembrance, and hope.

Many pregnancies begin with itching or burning palms that are brushed off as “normal” — even when they are early clues to Intrahepatic Cholestasis of Pregnancy (ICP). Hope From John Ellis exists to make sure those warning signs are not missed, so that moms are heard sooner, ICP is recognized earlier, and care can change the story for families. ICP is a liver disorder that occurs during pregnancy and involves impaired bile flow and a buildup of bile acids. It is associated with serious risks in pregnancy including stillbirth and is part of the broader field of pregnancy-related liver health. ICP can affect anyone who is pregnant.

OUR VISION

A world where preventable pregnancy loss is reduced, pregnancy-related liver conditions are recognized earlier, and every family facing loss is met with compassionate care and lasting hope.

OUR MISSION

Hope From John Ellis advances maternal and liver health by increasing awareness of Intrahepatic Cholestasis of Pregnancy, promoting timely recognition and education, and supporting families affected by pregnancy and infant loss with compassion, remembrance, and practical care.

About ICP

Intrahepatic Cholestasis of Pregnancy, or ICP, is a pregnancy-specific liver disorder that changes how bile moves through the liver, causing bile acids to build up in the blood. The only symptom is usually itching, often without a rash. It may begin on the palms of the hands or soles of the feet but usually becomes widespread. There are few risks to the pregnant person, but there can be serious risks for the fetus including respiratory distress at birth, preterm delivery or stillbirth. These risks can be managed with active treatment including properly timed delivery.

Why Awareness Matters

ICP is a rare pregnancy condition and many patients sometimes dismiss itching as normal. ICP can be diagnosed with a simple blood test measuring bile acids. As it is a rare disorder, education of both patients and providers is needed to guarantee that complete care is given. We believe education can change outcomes by helping families ask better questions and can help clinicians respond faster.

Our Guiding Values

Compassion & Hope

We meet families in grief with tenderness, dignity, and practical support, recognizing that every story of loss deserves to be held with care. Our founder, Elisabeth, has also walked this path. We believe in remembering all babies who are lost too soon and saying their names aloud. We hope to help educate physicians and providers to provide supportive care with pregnancy loss.

Advocacy

We champion awareness of ICP and other pregnancy-related liver conditions so symptoms are recognized, questions are asked, and lives are protected. ICP can have lifelong effects on liver health and education of postpartum care is minimal. We aim to extend advocacy strongly beyond pregnancy.

Integrity

As patients who have experienced ICP ourselves, we hold ourselves to the highest standard to provide only evidence based information so we can be a trusted source of information. To ensure our resource standards maintain the most current and up to date science, our leadership includes board certified medical professionals with expertise and lived experience in ICP.

Collaboration

We are also patients who work alongside medical professionals and other liver advocates. This strong relationship allows us to promote ICP research, strengthen education and awareness, and support both maternal and life-long liver health.

HOPE FOR THE FUTURE

Hope From John Ellis was created by the Naff family in memory of John Ellis Naff, who was born into heaven at 35 weeks gestation on January 6, 2017, after a misdiagnosed case of Intrahepatic Cholestasis of Pregnancy. We share John Ellis’s story and stories from our community to raise awareness, strengthen maternal liver health, and bring hope to grieving families.

We are committed to actively leading and engaging in meaningful research about ICP and other liver health issues with a hope that someday, ICP is longer a threat to pregnancies.

Elisabeth Naff

A proud mother of three boys—Baylis, John Ellis, and Stanton—her family’s story is one of love, loss, hope, and a commitment to helping others. While Baylis and Stanton are here on earth, John Ellis remains forever in their hearts.

On January 6, 2017, at 35 weeks of pregnancy, she experienced the devastating loss of her son, John Ellis, due to undiagnosed Intrahepatic Cholestasis of Pregnancy (ICP). After developing severe itching while taking amoxicillin, her symptoms were initially attributed to an allergic reaction, delaying recognition of ICP. This tragedy inspired her lifelong commitment to raising awareness, improving early recognition, and preventing avoidable stillbirths and pregnancy complications.

As a passionate advocate she is dedicated to ensuring that families have access to trusted information, compassionate support, and resources throughout their pregnancy journeys.

Dr. Laura Bonebrake

Laura Bonebrake, MD, is an obstetrician-gynecologist practicing in St. Louis, Missouri, whose clinical expertise, research interests, and personal experiences have made her a dedicated advocate for individuals affected by Intrahepatic Cholestasis of Pregnancy (ICP), a rare pregnancy-related liver condition associated with serious complications, including stillbirth.

Dr. Bonebrake's commitment to ICP began during her own pregnancies, when she was diagnosed with the condition early in each pregnancy. Faced with the uncertainty of a rare liver disorder, she immersed herself in scientific research, clinical literature, and emerging evidence to better understand the condition and its implications for maternal and fetal health. Her experience shaped a lasting commitment to advancing education, research, and patient-centered care.

Bringing together her expertise as a physician and firsthand experience as a patient, Dr. Bonebrake has become a trusted advocate for improving the recognition, management, and long-term understanding of ICP.