PKU CONFRONTING THE
BURDENS WE CARRY NEWBORN SCREENING CALL ME BOB:
A STORY ABOUT DR ROBERT GUTHRIE PKU A CONVERSATION
BETWEEN PKU ADVOCATES PKU A STORY FROM PKU HISTORY:
"WHEN ARE YOU GOING TO TREAT MY CHILD?" PKU MENTAL HEALTH
OF PKU ADVOCATES RARE DISEASE SELF-CARE IS ADVOCACY TOP STORIES

PKU MY PKU LIFE This is Kevin Alexander's story of living with PKU. We all have a story. And when you tell it, you have no idea who will listen. So tell your story. Because everyone matters. Every voice matters. Every story matters. Every person matters. NEWBORN SCREENING "FOR KATY" Newborn screening is a human right. It saves lives. This film, “For Katy” tells the story of a girl born with PKU who did not receive newborn screening at birth. We share the same diagnosis, but have different lives. As long as one child falls through the cracks in the newborn screening—a system that has saved lives but needs constantly improving—we need to keep fighting, speaking, and showing up for those who need help the most. FILMS

A MESSAGE FROM KEVIN ALEXANDER Welcome to PKU Journal. On this site you will find a collection of stories and reflections on life from someone living with the rare disease Phenylketonuria (PKU).
I've covered many stories throughout my advocacy journey, exploring issues related to PKU, newborn screening, rare disease, and mental health. Over the years, I have produced films, recorded podcasts, and written many articles about this unique lifestyle.
I hope something here helps you on your journey. CONNECT ON INSTAGRAM

MENTAL HEALTH REGAINING HOPE:
MY JOURNEY TO RARE DISEASE ADVOCACY This is a story about hope. Believing in hope, losing hope, and regaining hope. It's also about mental health. My mental health. I also happen to have a rare disease known as PKU. RARE DISEASE A STORY FROM PKU HISTORY This is a story from PKU history. It's about the impact of advocacy and the significant role it plays in the advancement of treatments for rare diseases, as exemplified in the story of Mary and Sheila Jones and their contribution to the treatment of Phenylketonuria (PKU). MENTAL HEALTH LEAD FROM THE FRONT: A LEADERSHIP STORY FROM WORLD WAR II Explore the remarkable leadership lessons drawn from the life of Major Richard Winters, an extraordinary figure from World War II. This story delves into his inspiring qualities and principles that can be applied to everyday life, rare disease advocacy, and personal growth. NEWBORN SCREENING "CALL ME BOB" A STORY ABOUT DR. ROBERT GUTHRIE In this story, I delve into the life and legacy of Dr. Robert Guthrie, a pioneering figure in newborn screening. Guthrie's groundbreaking work in developing the bloodspot test for newborn screening has saved countless lives and continues to impact the world today. SPOTLIGHT

PKU A CONVERSATION ABOUT RARE DISEASE STORYTELLING NEWBORN SCREENING THE NEWBORN SCREENING SYSTEM: A PUBLIC HEALTH LEGACY NEWBORN SCREENING NEWBORN SCREENING SAVES LIVES: A CALL TO ACTION MENTAL HEALTH BE A HEALING PRESENCE PKU WHEN I ALMOST GAVE UP: MY STRUGGLES WITH PKU TREATMENT NEWBORN SCREENING NEWBORN SCREENING IS A HUMAN RIGHT RARE DISEASE ADVOCACY IS SOCIAL JUSTICE MENTAL HEALTH THE EMOTIONAL TOLL OF RARE DISEASE ADVOCACY ARCHIVES