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.
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 Introduction:
The host, Jason Madison, introduces Dr. Klane White, a pediatric orthopedic surgeon specializing in skeletal dysplasia, metabolic bone disease, spinal deformity, and genetics.
Dr. White is an MPS parent who has navigated the challenges of caring for a child with a rare, life-threatening disease.
Interview Topics:
Navigating Life and Career with a Child with a Rare Disorder:
Dr. White's personal experience and challenges as a parent and surgeon.
Balancing care for the child's specialized needs and managing personal and professional life.
Supporting Non-Affected Siblings:
Addressing the concerns of overshadowing and ensuring a sense of individuality and involvement for non-affected siblings.
Utilizing support from friends, family, and the community to help provide attention and engagement for non-affected siblings.
Dealing with Grief and Honoring the Legacy:
Coping with the loss of a child with a rare disorder and the grief process.
Keeping memories alive and celebrating the child's life through rituals, commemorations, and ongoing remembrance.
Establishing a foundation or initiative to give back in the child's name, supporting other children with chronic, life-threatening diseases.
Conclusion:
Expressing gratitude for the support received from the MPS community and emphasizing the importance of reaching out for help.
Highlighting the power of connections formed with other families and professionals during the journey.
Encouraging listeners to cherish and remember the lives of their loved ones and find meaningful ways to honor their legacies
26 Jun 2023
The Journey of a Biochemical Genetic Fellow with Mary Kate LoPiccolo
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 healthcare networks and the challenges of replacing retiring or relocating specialists
Dr. Mary Kate's educational path: Four years of medical school, followed by specialization in pediatrics, then two years of medical genetics training, and one year of biochemical, genetic-specific training
Biochemical genetics: Deals with genetic disorders affecting metabolism and biochemistry, such as MPS and ML
Dr. Mary Kate's interest in rare diseases and the experience that led her to biochemical genetics
Limited emphasis on biochemical genetics during medical school
Dr. Mary Kate's first patient encounter in the pediatric genetics clinic, working with a family transitioning care for a child with severe MPS II
Challenges faced by the family in accessing services and support in a rural area
Role of fellows in patient care, working under the supervision of attending physicians
Importance of open communication between families and healthcare professionals
Learning to deliver difficult news with empathy and gauging family expectations
Emphasis on being straightforward and honest with families, even when delivering challenging news
Insights into the field of biochemical genetics, the journey to becoming a specialist, and the dedication required to provide optimal care and support to patients and families.
28 Feb 2023
Making a Difference with Mark Dant
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 Foundation has funded millions in research and was instrumental in the development of Aldurazyme, the first and only FDA approved drug for the treatment of MPS I.
Mark and his family have been key advocates and successfully championed the passing of the Ryan Dan Healthcare Opportunity Act in the US House of Representatives in 2009.
Mark is a former police officer and retired as an Assistant Chief of Police in 2016, and now spends his time volunteering for the Ryan Foundation and other rare disease nonprofits.
Stephanie and Mark talk about his experience as a parent of a child with MPS and the journey of advocacy and research.
Mark explains how times were different when Ryan was diagnosed, with no biotech companies, limited research, and no hope.
Mark shares how he learned about the disease and did research through library visits and phone calls, and how he eventually found a rare disease conference in Denver.
Mark remembers a specific moment at the conference when he realized the urgency to change the situation for children with rare diseases.
The Ryan Foundation (https://ryanfoundation.org/home)
The National MPS Society exists to cure, support, and advocate for MPS and ML.
If you like Our Voices, visit our website (https://mpssociety.org/) and follow us on social media on Facebook (https://www.facebook.com/NationalMPSSociety/), Instagram (https://www.instagram.com/mpssociety/), Twitter (https://twitter.com/MPSSociety), and LinkedIn (https://www.linkedin.com/company/national-mps-society). And if you like the podcast, we'd appreciate you telling a friend (maybe even two).
31 Jan 2023
Season 1 Recap
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, and volunteers.
Advocating for others is a key part of the MPS Society and the podcast has allowed us a platform to advocate, in the case of one episode, in real time like in the case Olivia where we interviewed her parents about her first-year experience has been unnecessarily challenging because the college has done little to nothing to accommodate her needs.
We are excited about the new season, guests, and topics we will get to talk about this year.
Contact us if you'd like to suggest a topic, speaker, or story for an upcoming episode.
The National MPS Society exists to cure, support, and advocate for MPS and ML.
If you like Our Voices, visit our website (https://mpssociety.org/) and follow us on social media on Facebook (https://www.facebook.com/NationalMPSSociety/), Instagram (https://www.instagram.com/mpssociety/), Twitter (https://twitter.com/MPSSociety), and LinkedIn (https://www.linkedin.com/company/national-mps-society). And if you like the podcast, we'd appreciate you telling a friend (maybe even two).
27 Dec 2022
A Fierce Accessibility Advocate- Fanny Zambrano
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 mother not speaking English, when Fanny was a child, she learned early to advocate for herself as she translated for her mother during doctor appointments.
Fanny shares her experience during college. She knew a large campus would be impossible for her, so she found a college in Texas where the building was only three floors and not as expansive as other campuses.
She shares about overcoming other people's perceptions. And how she learned to overcome her embarrassment of using a wheelchair.
The National MPS Society exists to cure, support, and advocate for MPS and ML.
If you like Our Voices, visit our website (https://mpssociety.org/) and follow us on social media on Facebook (https://www.facebook.com/NationalMPSSociety/), Instagram (https://www.instagram.com/mpssociety/), Twitter (https://twitter.com/MPSSociety), and LinkedIn (https://www.linkedin.com/company/national-mps-society). And if you like the podcast, we'd appreciate you telling a friend (maybe even two).
29 Nov 2022
A University Experience of Unnecessary Obstacles
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. We talk about what is being done and what can be done to prevent this from happening to another student.
25 Oct 2022
Under the Hurdles with Sheri Wise
In our previous episode, we discussed newborn screening and advancements. In this episode, we want to focus on the life experiences of Sheri Wise, an affected adult with a later diagnosis and how she has approaches life's hurdles. Interviewed by Jason Madison, who is also an adult with MPS.
27 Sept 2022
The Future of Newborn Screening with Dr. Mike Hu
We talk with Mike Hu again about the future of newborn screening and his non-profit, 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.
30 Aug 2022
Newborn Screening Advocacy with Dr. Mike Hu
We talk to Dr. Mike Hu, PhD 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 three of his sons were diagnosed with MPS II, Hunter Syndrome.
26 Jul 2022
Inclusion with Kendra Gottsleben
Kendra is an author, advocate, and trailblazer for inclusion. She tells her story of starting in a small town to being a runway model for Tommy Hilfiger in New York City for adaptive clothing and how that experience and others launched her career.
28 Jun 2022
Radical Acceptance with Morgan Motsinger
Our host Maureen Cote has a compelling interview with Morgan Motsinger, a life coach, mom, and serial entrepreneur. We're going to talk about Morgan's unique journey with her beautiful family, her family's devastating diagnosis, and how she got to the place of radical acceptance.
24 May 2022
Continuously Evolving
Your host, Jason Madison, talks about May 15th - which is international MPS awareness day. In this episode we talk with a mother whose life and expectations of the future were rocked by an unexpected and frightening diagnosis. Then within a span of weeks went from feelings of despair and hopelessness to being shown support, knowledge that she was not alone, and a reason for hope.
26 Apr 2022
Expanding Our Mission
We talk with Steve Holland and Barbara Wedehase about the history of the National MPS Society, how it was launched, and how it has evolved throughout the years.
29 Mar 2022
Saving Ryan with Dr. Emil Kakkis and Ryan Dant
This is the second episode of the National MPS Society's Podcast: Our Voices with host, Stephanie Cozine. Join us as we talk to Dr. Emil Kakkis and Ryan Dant about the trials and tribulations of drug development. We share a story of a passionate doctor racing to bring treatment to patients, like Ryan, that will alter the course of those living with MPS I.
28 Feb 2022
Isabel's Calling: A Triumph for Advocacy
The first episode of the National MPS Society's Podcast: Our Voices with Jason Madison. Join us as we raise awareness for National Rare Diseases day on February 28th with a focus on the importance of advocacy. We share a story of a young woman and her journey to find treatment and healthcare far from home.
28 Feb 2022
This Mess Called MPS
Our podcast hosts share their stories and how they came to work with the National MPS Society's podcast: Our Voices.
1 Feb 2022
Our Voices Trailer
The National MPS Society exists to cure, support and advocate for MPS and ML.
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