Dr. White speaks with host Jason Madison about his personal connection with MPS, and navigating life and career with a child with a rare disease. He addresses ways to support siblings of those with MPS, and how to honor the memory and create legacies from loss.
Dr. Mary Kate LoPiccolo connects with host Jason Madison to discuss medical biochemical genetics and working as a new clinician in the genetics field. Sharing of her passion for medicine and initial sparks of interest in working with those with MPS and ML from a child with neuronopathic MPS II (Hunter syndrome), Dr. LoPiccolo speaks of challenges and the dedication needed to provide care and support.
Mark Dant speaks with host Stephanie Cozine about his experiences after his son, Ryan, was diagnosed with MPS I. Mark discusses the impact of The Ryan Foundation in the development of the enzyme replacement therapy Aldurazyme, the first and only FDA-approved treatment for MPS I. He shares of a specific moment that sparked his urgency to change the course for those with rare diseases.
In this first season recap, host Stephanie Cozine shares some behind-the-scenes details about the interview process and connecting with those who inspire us in the MPS community.
Coming from a large family in Chicago, Illinois, Fanny Zambrano refused to let her mobility issues keep her from joining in with her relatives and making connections. She shares stories of advocacy from a young age with our host, Jason Madison. From translating at her own appointments to finding a college that could meet her needs for accessibility, Fanny demonstrates ways she’s found to overcome obstacles related to MPS IVA, Morquio syndrome.
Jamie Lipscomb is the father of Olivia, who has MPS I. After a lifetime of overcoming, Olivia was finally ready to go to college. Her first-year experience has been unnecessarily challenging because the college has done little to nothing to accommodate her needs. Jamie talks with host Maureen Cote about what is being done and what can be done to prevent this from happening to another student.
Sheri Wise shares a look at the adult journey with MPS with our host, Jason Madison. They talk about overcoming hurdles, by jumping over or going under, and finding your way to keep moving forward.
In this bonus episode for Newborn Screening Awareness Month, host Stephanie Cozine speaks with Mike Hu again about the future of newborn screening and his non-profit organization, Project GUARDIAN, which stands for Genomic Uniform-Screening Against Rare Diseases In All Newborns. The nonprofit looks to promote genomic sequencing as a platform to newborn screening.
In this episode, father and trailblazer Dr. Mike Hu speaks with host Stephanie Cozine about newborn screening advocacy on a federal and state level. Mike shares with us how his educational background with molecular genetics collides with his personal life, when two of his three sons were diagnosed with MPS II, Hunter Syndrome.
Kendra Gottsleben is an author, advocate, and trailblazer for inclusion. She talks with host Stephanie Cozine about her life in a small town and experiences that led to becoming a runway model for Tommy Hilfiger in New York City. Working on an adaptive clothing line with the designer was an experience to help launch her career and define goals for her life.
