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We explore the unique lives and work of our community's leaders, professionals, and inspirational members--conversations about the challenges, courage, and dedication that are pillars of this community. We share new perspectives, insights, and knowledge about the rare disease that impacts our daily lives and guides our individual journeys. The National MPS Society exists to cure, support and advocate for MPS and ML.
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Grief, Legacy, and Hope with Dr. Klane White
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Show Introduction: The host introduces the National MPS Society's Our Voices Podcast for the second season, focusing on unmet needs and areas requiring more MPS and ML community support. Emphasizes the lack of knowledgeable physicians in rare disorders like MPS and ML, leading to dismissive attitudes and missed treatment opportunities. Interview In…
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The Journey of a Biochemical Genetic Fellow with Mary Kate LoPiccolo
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The focus of the second season: Unmet needs and areas requiring more support in the MPS and ML community Goal: Explore resources, provide guidance, and start conversations about meeting these needs Guest: Dr. Mary Kate LoPiccolo, Medical Biochemical Genetics Fellow. Discussion on the lack of specialized genetic doctors and researchers in regional h…
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Making a Difference with Mark Dant
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Stephanie Cozine introduces Mark Dant as the founder and volunteer executive director of the Ryan Foundation, and former board chair of the Every Life Foundation for Rare Diseases, and former president and CEO of the National NPS Society. Mark and his wife founded the Ryan Foundation in 1992 after their son, Ryan, was diagnosed with MPS I. The Ryan…
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In this episode: We go over what we've learned and experienced during the first season of "Our Voices." We share some behind the scenes info about the pre-interview process and meeting people we've admired in our community. We are fortunate to have many community leaders and pioneers come onto the podcast that has inspired us as parents, friends, a…
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A Fierce Accessibility Advocate- Fanny Zambrano
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In this episode: Fanny shares her diagnostic journey to her diagnosis. She is from a large family in Chicago. A large family meant a lot of family gatherings for Fanny, and she refused to let her mobility issues keep her from them. This is an issue that affects a lot of people with mobility issues, especially during the holiday season. With her mot…
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A University Experience of Unnecessary Obstacles
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In this episode: At 18 months of age, Olivia was diagnosed with Hurler Syndrome (MPS IH). She has always been an overcoming and has overcome every obstacle in her path, and now at 18 years old, she has the opportunity to go to college. Today we talk about Olivia's first semester at college and her being a trailblazer. And her parents' experience be…
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In this episode: Sheri Wise is a current member of the Society's board of directors. We discuss how great it is that there are more and more diagnoses in newborns and infants, but for us, it was later diagnosis and longer diagnostic journeys. "There wasn't much information about MPS before the internet, which was probably a good thing." ~ Sheri Wis…
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The Future of Newborn Screening with Dr. Mike Hu
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In this episode: We are back talking with Mike Hu about Project GUARDIAN. Project GUARDIAN advocates for and supports sequencing based newborn screening to identify pre-symptomatic patients who can either benefit from early intervention using existing treatments or eligible for clinical trials of novel treatments, at a disease stage when treatment …
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Newborn Screening Advocacy with Dr. Mike Hu
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In this episode: Two of Mike's sons have been diagnosed with MPS II Hunter Syndrome. Mike paraphrases Steve Jobs, "The dots you cannot connect them looking forward, you can only connect them looking backward," when describing his journey with how his education, research, and career ultimately collide with his family life. Mike was born and raised i…
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In this episode: Kendra was born and raised in a small town in South Dakota, where her community nurtured her with inclusion and support. She has always been fascinated with psychology and sociology, leading her to pursue a degree from Augustana University. When Kendra moved to a larger community and now advocating for herself. She has a deepened d…
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Radical Acceptance with Morgan Motsinger
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On this episode: Annie, Morgan's daughter, was diagnosed about 10 years ago with MPS IIIA, also known as Sanfilippo IIIA. Children with MPS lack an enzyme that breaks down complex sugar molecules, which leads to progressive disease manifestations. Morgan shares her perspective on her daughter's initial diagnosis, including the initial encounter wit…
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On this episode: Today's guest, Lisa Todd is the current chair of the National MPS Society. Lisa is a CPA, focusing on work with non-profits. Lisa heard about the National MPS Society in an email from a friend after receiving her son's diagnosis with the subject line H.O.P.E. Her son was diagnosed at 8.5 years old, which is a pretty late diagnosis.…
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On this episode: Steve Holland has an extraordinary history with the National MPS Society. He was one of the early leaders who helped guide the society from being focused primarily on family support to now its larger issues of advocacy, research, and finding a cure. Steve shares some of his family's journey, and early diagnosis before treatments we…
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Saving Ryan with Dr. Emil Kakkis and Ryan Dant
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On this episode: Stephanie interviews Dr. Emil Kakkis, MD, PhD and Ryan Dant about the trials and tribulations of bringing a much needed drug to patients in a community desperately hanging on to the hope of one day having treatment and eventually a cure. Dr. Kakkis is a physician and researcher with a relentless work ethic who embarks on one of the…
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Isabel's Calling: A Triumph for Advocacy
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On this episode: Jason interviews Isabel Bueso (born Maria Isabel Bueso Barrera), a Guatemalan activist with MPS, living in the United States under deferred action. After receiving an unexpected threat of deportation which meant no longer receiving her life-saving treatment and having to leave the only life she knew, this young woman recognized som…
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On this episode: In this special Bonus Episode, we wanted to introduce the dedicated individuals that will be hosting the official podcast of the National MPS Society: Our Voices. Terri Klein, Maureen Cote, Stephanie Cozine, and Jason Madison are here to talk about "This Mess Called MPS." Terri introduces the National MPS Society and explains what …
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Welcome to the National MPS Society: Our Voices podcast. This is such an exciting opportunity to bring the voices of community leaders, experts, and inspiring individuals to you. On your time, at your convenience from wherever you may be, whether that's home, in the hospital room, or even your morning commute. We will be taking a deep dive into lif…
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