VIDEO LIBRARY

Meet Jason Madison, an influential figure in the MPS community. Filled with many touching stories, Jason shares his highs and lows of living with Hunter syndrome.

Join Jason as he reads our children’s storybook, Victor Overcomes his Fear. In this story, Victor embarks on a mission to overcome his fear of surgery with the help of his friends and family.

In this interview, Toni-Ann shares her experience of raising two boys with Hunter syndrome, describing the lead-up to their diagnoses and coming to terms with the difficulties they face.

In Part 1 of the Hunter Syndrome Journey, we explore the pathway to diagnosis. Follow five families’ journeys as they navigate the obstacles and challenges of finding a diagnosis.

In Part 2 of the Hunter Syndrome Journey, we look into dealing with a Hunter syndrome diagnosis. We hear from families as they describe the range of emotional responses they experienced, and offer guidance on coping strategies and finding support.

Part 3 of the Hunter Syndrome Journey introduces the medical specialists who may be involved in ongoing care and symptom management.

Part 4 of the Hunter Syndrome Journey explores the ongoing emotional impact of living and caring for someone with Hunter syndrome, and offers guidance on getting support.

Part 5 of the Hunter Syndrome Journey offers practical tips on adapting your home and work environments to make daily life a little easier.

In Part 6 of the Hunter Syndrome Journey series, discover guidance on navigating the world of work as an adult living with Hunter syndrome.

In this video, Dr. Barbara Burton, Dr. David Molter, Carrie Dunn, and her son, Jackson—who has been diagnosed with Hunter syndrome—join The Balancing Act to discuss Hunter syndrome.

Meet Kyle Plunkett, who has not allowed his Hunter syndrome diagnosis hold him back from enjoying life to the fullest.

Learn more about one of Kyle’s main interests: sports! Kyle describes his enjoyment of being a fan of sports and participating in activities.

In this video, Kyle shares the places he has traveled to and the destinations still on his bucket list.

Friends are an important part of Kyle’s world. He believes that one of the greatest gifts of his diagnosis is the people it has allowed him to connect with.

This video provides an overview of Hunter syndrome, exploring how glycosaminoglycan (GAG) buildup occurs and interferes with the functioning of certain cells and organs.

In this video, Professor Anna Tylki-Szymanska discusses the early neurological signs and symptoms of MPS II. These include cognitive impairment, attention deficit, sleep disturbances, and behavioral difficulties.

This short video describes the early symptoms of Hunter syndrome, which may include coarse facial features and enlarged abdomen, tongue, and tonsils.

This short video outlines the signs and symptoms of Hunter syndrome that may develop during the course of the disease.

The Diagnosis Doesn't Have to be Rare campaign aims to highlight the challenging diagnosis journey patients with rare diseases often experience, calling for improvement in the diagnosis pathway.

As a child with MPS II goes through adolescence, the gap between pediatric and adult care must be bridged. Here, Dr. Christina Lampe highlights the importance of embedding transition care as a key part of adolescent health provision.