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المحتوى المقدم من Joe Woolworth and National MPS Society. يتم تحميل جميع محتويات البودكاست بما في ذلك الحلقات والرسومات وأوصاف البودكاست وتقديمها مباشرة بواسطة Joe Woolworth and National MPS Society أو شريك منصة البودكاست الخاص بهم. إذا كنت تعتقد أن شخصًا ما يستخدم عملك المحمي بحقوق الطبع والنشر دون إذنك، فيمكنك اتباع العملية الموضحة هنا https://ar.player.fm/legal.
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Making a Difference with Mark Dant

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Manage episode 356599971 series 3320145
المحتوى المقدم من Joe Woolworth and National MPS Society. يتم تحميل جميع محتويات البودكاست بما في ذلك الحلقات والرسومات وأوصاف البودكاست وتقديمها مباشرة بواسطة Joe Woolworth and National MPS Society أو شريك منصة البودكاست الخاص بهم. إذا كنت تعتقد أن شخصًا ما يستخدم عملك المحمي بحقوق الطبع والنشر دون إذنك، فيمكنك اتباع العملية الموضحة هنا https://ar.player.fm/legal.
  • 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.

If you like Our Voices, visit our website and follow us on social media on Facebook, Instagram, Twitter, and LinkedIn. And if you like the podcast, we'd appreciate you telling a friend (maybe even two).

  continue reading

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Artwork
iconمشاركة
 
Manage episode 356599971 series 3320145
المحتوى المقدم من Joe Woolworth and National MPS Society. يتم تحميل جميع محتويات البودكاست بما في ذلك الحلقات والرسومات وأوصاف البودكاست وتقديمها مباشرة بواسطة Joe Woolworth and National MPS Society أو شريك منصة البودكاست الخاص بهم. إذا كنت تعتقد أن شخصًا ما يستخدم عملك المحمي بحقوق الطبع والنشر دون إذنك، فيمكنك اتباع العملية الموضحة هنا https://ar.player.fm/legal.
  • 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.

If you like Our Voices, visit our website and follow us on social media on Facebook, Instagram, Twitter, and LinkedIn. And if you like the podcast, we'd appreciate you telling a friend (maybe even two).

  continue reading

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