Our Voices: The Official Podcast of the National MPS Society
Our Voices provides relatable connection and education to support, inspire, and inform the MPS community. This official podcast of the National MPS Society melds stories and information to bring a variety of unique perspectives and discussion.
With guest interviews, hosts Maureen Cote, Stephanie Cozine, and Jason Madison shine a light on topics important to the MPS community.
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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.
“I think if I was going to put a label on my life of what the biggest lesson has been through all of this, it has been how to be resilient in the face of extraordinary circumstances.” Morgan Motsinger shares her story with our host, Maureen Cote. Morgan speaks of her journey to radically accepting her daughter Anni’s diagnosis of Sanfilippo syndrome, MPS IIIA, and prioritizing self-care as a mother and primary caregiver.
Our host, Jason Madison, talks with the chair of the board of directors, Lisa Todd. Lisa is the mother of a son with MPS II. She shares her story and discusses where the Society is now and plans for the future, and highlights International MPS Awareness Day.
Listen in on the conversation focused around the history and early days of the National MPS Society and MPS Awareness Day with host, Maureen Cote, featuring special guests Steve Holland and Barbara Wedehase. Upon this foundation, we will continue to build an organization that exists to cure, support, and advocate for those with MPS and ML.
Dr. Emil Kakkis and Ryan Dant talk about the trials and tribulations of drug development. We share the story of a passionate doctor racing to bring treatment to patients like Ryan, altering the course of those living with MPS I, and saving lives. For more information, download the book, Saving Ryan, now available on Kindle.
Episode 1 highlights how advocacy changes lives. In a conversation with Isabel Bueso, she explains how her story reached into the walls of Congress, bringing her face-to-face with lawmakers who would make decisions about her life and treatment. Join us on Rare Disease Day (Monday, February 28, 2022) to learn more.