every life foundation

• 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

The  National MPS Society exists to cure, support, and advocate for MPS and ML.

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