National MPS Society: Our Voices

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…

• 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 preside…

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 adm…

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 mobi…

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 h…

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 …

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 eit…

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 ba…

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, l…

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, whi…

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…

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 t…

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 h…

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…

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…