Mark Dant, Pushing for Research that Saved His Son’s Life in the Fight Against MPS I

01/13/20 • 24 min

In this episode, Mark Dant, Founder of the Ryan Foundation speaks with Steve Smith, WCG’s President of Patient Advocacy. Their conversation highlights the importance of Patient Advocacy Groups – and the resources they bring to individuals diagnosed with a disease – as well as the great promise clinical trials bring to patients. Mark shares a personal story of his son, Ryan, who was diagnosed with MPS I, and how Patient Advocacy Groups and clinical trials have positively impacted their lives.

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Chasing My Cure: an Interview with Dr. Fajgenbaum

In this episode, WCG’s President of Patient Advocacy, Steve Smith, sits down for an interview with Dr. David Fajgenbaum, Assistant Professor of Medicine at the University of Pennsylvania and Author of Chasing My Cure: A Doctor’s Race to Turn Hope Into Action. In this podcast, you’ll hear Steve and Dr. Fajgenbaum discuss what it’s like to be a patient of a rare disease – in this case Castleman’s disease – and Dr. Fajgenbaum’s fight to find a cure for his own disease. This is a story of incredible courage and uniquely acquired wisdom. It is a story of triumph over adversity. And it’s a story of life changing, groundbreaking hope.

Next Episode

Ensuring Genetic Counseling is Incorporated Into the Patient Experience: An Interview with Sarah Zentack & Leslie Urdaneta

In this episode, WCG’s President of Patient Advocacy, Steve Smith, sits down with Sarah Zentack, a Certified Genetic Counselor at InformedDNA and Leslie Urdaneta, Family Support Coordinator at the National MPS Society. Their discussion highlights the importance of genetic counseling and the intelligence patients can gain to better understand their treatment options, ensure they’re receiving the correct information and interpretation of results, and feel empowered to make the right choices for their care options.